to ask for your help to decide whether I should have a child or not? (EDS related)

(176 Posts)
EverythingsBeachy Fri 01-Mar-13 21:25:41

Ok here goes. Posting to ask for everyone's advice as to what I should do, whether I should have a baby or not. Obviously nc'd from regular as I will probably be completely identifiable, so if you do know me lovely friends who I know are on MN, don't out me by name!

Will try and include everything relevant, don't want to drip feed.
I have a disability called Ehlers-Danlos syndrome (EDS), the disability name itself doesn't matter if you've never heard of it. This causes by joints to dislocate, causes a lot of pain, fatigue and all sorts of affects on my heart, bowel, brain wiring etc. the tiredness is overwhelming and I need help with everyday stuff like cooking, washing, dressing etc.
Have been with DH for 10years, always assumed would have children, but disability now means I use a wheelchair anywhere out the house, including work.
I work part-time and am just about managing to stay working in my job. In 2 1/2 years my job should be in a place that if my disability worsens, I should be able to remain at work, but getting there will be difficult. Work are doing all they can to get me there, but I know there might come a stage when it is not safe to do my job.
We know we can physically get pregnant, as got pregnant last year but had a miscarriage. On seeing the consultant, he suggested an appointment to discuss further pregnancies as it might not be a good idea for me. Her that appointment soon.

There are 3 issues for me, being pregnant, looking after a baby and the genetics.

1- risks for pregnancy include preterm labour and premature baby, increased dislocations, very poor skin tissue healing from tearing or suturing, there is a possibility that I could be off work from as early as 12 weeks in worst case scenario. Also that I could damage by joints to the stage that I would not be able to work afterwards. Let alone look after a baby. I also have a new leaking heart valve . Rheumatologist thought pregnancy wasn't the brightest idea, another more senior one said yes, with extra care. But he's a specialist in London so was a one off visit. If I can no longer work we will be screwed financially, and unable to afford a baby

2- most of my friends have babies and let me practice with them. I know I can't bath a baby in the bath, baby bath or otherwise, I can't bend over a cot or a Moses basket, I can't bottle feed a baby unless I am not holding them at all, I cannot change them on my lap, the floor or a sofa. But can on a baby changer. I cannot life a baby car seat in and out the car, even when empty. But we've looked into adapting main stream equipment, like stokke pram, bunk cot, tummy tub and bimbo, slings etc. my DH is great and tells me not to want to bf so he can do the nights etc, but he will be at work during the day. Both sets of parents live a 2 hour drive away.

3 - there is a 50% chance of passing this condition on, and not know the severity. There is no prenatal screening so will not know if baby is affected until baby born. We have spent years agonising over this and if I had had better input when younger might not be in the state I am in. So we have kind of accepted this

So our options are not having children, having one baby, adopting or surrogacy. I am so maternal I really want a baby, but also feel really selfish that I don't want to be completely broken and still want to work and contribute in the future. I think I have ruled out adoption, there are so little children out there to adopt and so strict, I think I would not qualify with the care I could give. Looked into surrogacy and would do host surrogacy, even though it would mean using my eggs and passing it on. One friend always used to offer to be our surrogate, but now it looks like we are at that stage, she does not want to do it, which I am completely fine and happy with that. My DH doesn't know how he feels about surrogacy anyway. The cost has ruled it out anyway, being around £25,000 we do not have that money, could not get a loan and are not far enough into our mortgage to realise that kind of money.

So it leaves us with me having a baby if we want one, as there are no options left. So should I go for it again, I think last time we though I wouldn't get pregnant so kind of forgot about a lot of the issues, or never have a baby. I do have lovely friends who know children might not be possible and keep us very involved in our god daughter life. I love her to bits. If I wait 3 years I am more likely to be able to keep my job and continue working. But I think physically if I don't go through pregnancy now, I will be a lot worse in 3 years time, going on my current rate of deterioration.

Thanks for reading this far if stayed with be, sorry if you think IABU to ask this, but we have spent years thinking and I have no idea what to do, I am so torn and spend evening crying about this decision. From feeling selfish to be worrying about the physical effects on me, to dreaming of being pregnant, holding a baby an bfing it.

FarBetterNow Fri 01-Mar-13 21:37:34

I greatly admire you.
I cannot begin to imagine the difficulties you face in your everyday life.
I am wondering how you would physically manage to look after a baby if your husband is at work, if you are unable to lift a baby out of a crib, etc.

Life has not been kind to you, though you do have a wonderful DH, but maybe we cannot or should not have everything that we wish for.
Would it put a strain on your DH and your relationship if you did choose to have a baby?
Maybe, I shouldn't say that but you have asked!

OhDearieDearieMe Fri 01-Mar-13 21:40:15

Well. I feel for you - truly I do - but I just wouldn't. I can kind of understand the yearning you feel but I think you have a duty to yourself and your theoretical unborn child to overcome that yearning. I guess that won't be a popular view on MN but you did ask.

HollyBerryBush Fri 01-Mar-13 21:41:48

This is quite emotive isnt it? not the sort of thing that canvasing opinions on a chat board should be used to make a life changing decision.

Me? I would make an elective decision to not pass on a genetic illness. But thats me, I'm pragmatic

I see children every day who have to car for their parent. It isn't fair.

I can give you an anecdotal story, the short version, acquaintance, hereditary heart contition, 6 children, each one has undergone heart surgery. Ok I can accept one or two children before the hereditary factor was established - but 6 children? As a mother, you have to know when its not appropriate to cause further pain and suffering and concentrate on those children you have.

I'm sorry if that isnt the answer you were hoping for.

NayFindus Fri 01-Mar-13 21:42:35

Well, on the one hand I'm reasonably fit and healthy, but was 35 when I had dd. And I'm knackered. The sleepless nights (they don't tell you it's for months at a time, oh no...) the vomit and diarrhoea, the screaming of frustration at not being able to communicate. It takes a while to adjust and realise that however bad you're feeling, you still have to mop up the body fluids and not lose patience. That's the down side.

The up side is, they're not a baby forever. They learn to speak, control their bowels, and get a whole lot more fun to be with. But you've got to get through the first year or two without killing anybody. And that's if you actually bring the baby to term without too much damage to yourself.

Many, many people have children they neither want nor care about, and no amount of able bodiedness will unfuck them.

If you want them, have them. But think practically about how you'll be able to cope when you, they or both of you are ill, and do not underestimate the difficulty of looking after an entirely dependant being when you're exhausted. Love isn't enough. You will need friends willing to help out a lot. And you should go talk to the senior rheumatologist in London again. You need to know what special care you need and where you can get it from. You cannot go into this uninformed (which I'm sure you know, which is why you're posting).

Good luck x

N0tinmylife Fri 01-Mar-13 21:51:37

I think unfortunately this is an unanswerable question. As far as possibly passing on the condition, do you wish you had not been born? If so you should not have a baby, if not then that alone is not a reason not to do it.

As for the affect on your health, no one knows how much or little that would be. It sounds like having a baby is far riskier for you than for most people, but there is always a risk involved, and things can go wrong. I think if you can envisage the worst case scenario, and come up with a way of dealing with that, then there is no reason not to do it. My gut feeling is to go for it, but then I love being a Mum, and think everyone should do it, so I am horribly biased! What does your DH think?

FarBetterNow Fri 01-Mar-13 22:00:45

I think it would be very sad if the child became your carer and that would probably be inevitable.
Life is hard for a lot of people and very hard for some like you.
Women who don't want to, fall pregnant even though they are may using contraception. Other women are desperate for a baby, but no luck.

You have a fantastic, loving, caring husband, but maybe bringing a baby, who possibly has a genetic illness, into the world that you are unable to look after is not wise.
Sorry.

Smartiepants79 Fri 01-Mar-13 22:10:26

Difficult for others to really know what to advise.
Personally I would hope if I was in a similar situation I would have the strength to NOT have children.
I agree with others above that bringing a child into the world knowing that they may have to suffer as you have or will have to watch their mother slowly deteriorate before their eyes is a difficult choice. Also all the risks associated with the pregnancy and possible prematurity.
Obviously this can happen to any child but to do it KNOWINGLY is a very big difference.
This may very well be a very simplistic view and a bit preachy but I do believe quite strongly in not just doing things simply because you 'want' to. This descision has massive consequences for lots of people, not least the child in question.
Having said all that I cannot imagine being without my daughters and being childless would have left an enormous hole in my life.
You will have to think and plan extremely carefully for how you will cope without your husband at home. Could you pay for help?
Good luck with whatever you choose.

saggyhairyarse Fri 01-Mar-13 22:13:06

Is there a support group for people with your condition that you could contact and who could tell you their experiences and also suggest coping strategies for the various issues you might encounter? Could you employ a carer or a nanny to help at all if you needed to or would you be entitled to funding for this? I always think, where there is a problem, there is a solution but I am ever the optimist! I have a friend with a disability that resulted in her having a preterm baby who has cerebal palsy as result of her prematurity. I realise this is not the same as you but, whilst my friends life is not an easy one, she does get help from carers, her daughter is amazing and they have a wonderful relationship and both lead very full and happy lives smile Just wanted to offer some positivity...

HildaOgden Fri 01-Mar-13 22:17:18

On a purely 'head' based,intellectual level,I'd say no...don't have a child.

On a purely 'heart' based,feeling level,I'd say I feel deeply for your plight.But I'd also feel deeply for a child who was born either with the condition,or being born living with the certain restrictions caring for someone with such a condition would bring.

I feel like a bitch for saying that.I'm sorry sad

Trills Fri 01-Mar-13 22:20:15

Yes, you are being unreasonable to ask for our help to decide because no matter how much you type you will not be able to really explain the situation to us in sufficient details.

We can't make this decision for you.

Is there anyone in real life that you can talk to? They can't make the decision either but they might be more useful than a bunch of randoms who have only known you for a few paragraphs and whose personal issues or beliefs you don't know anything about.

formallyknownasloveydarling Fri 01-Mar-13 22:21:53

Gosh, would what strangers write on an Internet forum really influence your choices?
I am sorry but I think the most unselfish thing you could do is not bring a child into the world for all the reasons mentioned by other posters.
But I think there are better places to discuss this in rl.

elliejjtiny Fri 01-Mar-13 22:27:58

I have EDS (mild) and so does DH. We have 3 children who all have EDS and another on the way. My DS2 (aged nearly 5) seems very similar to you, symptom wise. I am very thankful he is a boy and won't have to make the decision that you are.

With your risk of passing on EDS any children you have will be closely monitored and given help straight away if needed. From a practical point of view could you pay a carer to help you with the baby?

maddening Fri 01-Mar-13 22:36:09

with eds aren't there different levels? I vaguely remember some can mean a greatly reduced life expectancy? Would having a baby impact that for you?

I think the risks for yourself might outweigh the benefit of having a baby. Then when you add in the risks for the child it possibly weighs on the side of the sensible thing to do would be not to.

As for the physical care - your dh would need to essentially be the main carer for your dc as well as for yourself - is he happy to do that? - and if your life expectancy is lower he has to consider the possibility of the worst happening.

but by god I can understand you wanting to do this and am so sorry this is so tough for you. I would investigate what support there is out there for you and your dc and see if you can build a strong plan of care and address the potential work issues and then decide if that is enough. Also see if there are ways you can prepare your body for this.

whatever you decide I wish you well

LivingProof Fri 01-Mar-13 22:41:10

Re point 3, could you have Preimplantation Genetic Diagnosis? Ehlers-Danlos syndrome type IV is on the list of conditions that Guy's can test for.

Phineyj Fri 01-Mar-13 22:47:28

This is very sad and unfair but I think you already know the answer to this question. The risk to you sounds too great, and that's before considering the situation of your DH/child.

EverythingsBeachy Fri 01-Mar-13 22:47:51

Thanks all, know there are a lot of edsers using MNHQ. yes I know its weird to post on hear, but I am glad I posted as I wanted blunt answers. We've talked to everyone in RL, friends just want to hug us, or cry with us, or tell us we would make wonderful parents, or that we would cope, find some way around it, that there is a 50% chance baby will be fine, or only mildly affected, that I have achieved so much in my life etc etc.

I would not have wished not to have been born, my life does have meaning and purpose and I aim to keep working.

The last thing I would ant is for any child to become a carer. That is something I wouldn't envisage as my DH has no problems, and at the moment I only need help with household stuff. He doesn't wash me, etc. except a couple of times a yer when I've dislocated something, the same with getting dressed etc. (unless that's being undressed during sex, then much more regular!) the things that DH does like washing, cleaning etc we don't see asa women's role etc, he does all the physical things, I pay bills do paperwork etc, so I cannot see a child becoming a carer for me.

DH is happy either way, if we do or don't have a child. I know the logic says not to have the condition passed on, and if there was a screening test I would take advantage of it. Some people have It mildly and severe children, some have it severe and have normal children, there is no pattern.

Thank you for your views and I am still glad I've posted, even if it did take me a week to summon up the courage to do, and what to put down.

I think because we both work, that I would get no help with looking after maybe, sure start type stuff etc, but we cannot afford a nanny.

I am not going to take a straw poll of all the "strangers on the Internet " and then go with the majority, but I really wanted honest opinions from people who weren't emotionally involved with us, who like I said all just think we would be great parents, to do it and would miss out otherwise

I have had a friend visiting for the last few days. She is single, and has no children. Through choice. She has 6 siblings, and they have many children. She said "I am lucky that I have so many children to love in my life". She is very involved in the lives of her nephews and nieces. They have special "Auntie days" on a regular basis where they are the focus of her attention. She is a teacher, and she helps with homework, baby sitting, etc.

She said to me: "I dont think people who is of bad health like me should become mothers. It is unfair on the child."

Her situation is not remotely as bad as yours. She has a bad back, has had a few ops on her back, she has had a few ops on her neck, and on her ankles. She has various allergies, and asthma.

She said : "With my various ailments, I could not give a child the care it deserves full time. I can only offer good quality care and attention now and then, so that is what I do to my siblings children".

I really admire her for her decision.

My sisters health deteriorated after she had her dd. I know for a fact that her daughter worries a lot, and is scared that her mum shall die, or die early. She has had to do much more housework than any child I know has ever done.

Yanbu for wishing for a child of your own. Not sure going ahead and having one is the right thing to do though, so yabu on that account. The risk to you and the baby is too great. Sorry. sad

Personally I could not risk having another, as I was very poorly with SPD after my second, and it really is not fair on my other children and possible newborn to have mummy in such poor health after giving birth. It took 6 months to get back to walking properly. Cannot put any child through that.

EverythingsBeachy Fri 01-Mar-13 22:49:39

Maddening and living, it's type 3, so no screening available, and it is not the life limiting variety. A very minute small risk of increased complications causing death, but not considered to be life limiting. If I had type 4, I would not even consider having a child

EverythingsBeachy Fri 01-Mar-13 22:52:46

Pure, we already have 2 god children who I absolutely love, and would have auntie days with and have them to stay when they are older. My friends make a point of making sure we are involved. So there will always be children around, and more nieces and nephews to come, if we choose not to. I'm someways I think that is the ideal world, like being a grandparent, you get to spend time loving them and playing, but then you get to sleep at night!

Tolly81 Fri 01-Mar-13 22:53:07

I'm familiar with EDS, but even then the spectrum of disease is massive. I know a lady with it in her 80s for example who is still independent but she has had several operations. I think it would be really difficult to manage a baby without a better support network than you have. It might be different if you had any parents nearby (assuming they'd be willing to be very hands-on) as then at least item 2 would not be as daunting. Is there any prospect that they might move closer if you were to get pregnant? Another big concern which you may or may not have thought of is the child injuring you by accident as they get older. My 9mo dd is currently at an age where she grabs hold of me very hard and may pinch or bite me. Obviously she doesn't realise she is hurting me. It is sometimes very difficult to get her to let go though and she can move her hand suddenly. If I had EDS and very fragile skin I would think she could do me a major injury. She is too young to understand commands, reasoning, etc.
I think as the situation stands with no family support I would say it probably shouldn't be done. If that were to change, then I think it depends on what the consultant says in your individual case. I really wish you luck. I also think it would be worth at least looking into adoption in a little more detail as it would avoid so many of these issues. Again, I guess your case there would be improved if you had family nearby as they would want to know there were contingencies. Good luck, such a hard decision.

EverythingsBeachy Fri 01-Mar-13 22:57:19

As for the thought
This is quite emotive isnt it? not the sort of thing that canvasing opinions on a chat board should be used to make a life changing decision.
Well the chat boards are full of people trying to make life changing decisions, leaving abusive partners, changing careers, moving abroad, lots of dilemmas so I am still happy that I've asked for opinions for my reasons stated above

I agree that this place is perfect for canvassing opinions on life changing decisions. Everybody does, however uncomfortable and emotive!

I wish you all the best! Such a tough lot to carry. I am sure you are a lovely aunt and godmother!

EverythingsBeachy Fri 01-Mar-13 23:00:06

Thank you tolly, we've never looked into adoption formally, as always assumed from things heard anecdotally that we wouldn't qualify. Also know of someone with mild EDS who adopted so not to have an affected child, and the adopted child was diagnosed with EDS.
I think adoption is wonderful, but currently I work with parents who have their children removed from them, so it is difficult for me to separate that

NewbieT Fri 01-Mar-13 23:00:45

You sound like a wonderfully thoughtful, caring and considerate person, which are great qualities for any parent. I can't see any complete sticking points from a practical lifting / changing etc point of view, and you have what sounds like a wonderful support network. The employment situation sounds like it weighs heavily on yr mind too but work is transient and changeable for most of us at the best of times so I wouldn't base your decision on that. Could you talk to a health visitor about what , if any, extra support would be available?

We will all have the choice of taking on caring responsibilities for parents as we get older, to a greater or lesser extent. That's a duty for us all, I think it's cruel for anyone to tell you that you shouldnt have kids because of it. You have probably had to sacrifice a lot already, if you can have a child I don't think anyone could blame you for not wanting to miss out on a source of so much joy. I can't believe that any child, if you took the brave decision to bring them into the world, would begrudge any extra caring responsibilities.

To all those saying 'don't do it' , I hope you never have the misfortune to develop serious ill health or disability, but if you did , I can't imagine You would immediately have your kids adopted as it will give them challenges, , just because the OP knows the risk of this up front doesn't mean she shouldn't have a child. I know people brought up in families with disability and they are arguably enriched , wiser, more caring and compassionate than most because of it.

OP I hope you can get some real life advice too and very best of luck with everything x

EverythingsBeachy Fri 01-Mar-13 23:01:36

pure I am the best god mother, the kind that always turns up with little presents, makes craft things and is happy to sit in the car playing pretend driving with a 3 year old and spending 20mins making the sun roof go back and forth!!

HildaOgden Fri 01-Mar-13 23:03:14

'I think because we both work, that I would get no help with looking after maybe, sure start type stuff etc, but we cannot afford a nanny.'

Apart from anything else....the above comment is something you need to consider very strongly.You both work,but could not afford childcare...so what happens if you did have a baby?Would one of you give up work to become a sahp?Could you all manage on one salary?

EverythingsBeachy Fri 01-Mar-13 23:04:41

Thanks newbie! I really don't see the child as being a carer, and I know it is completely different, as you do not go into pregnancy thinking it will happen, but people find out all the time that they will have a child with downs, or so,e other genetic abnormality that will mean a reduced life span for their child and they are still brought into the world and loved

EverythingsBeachy Fri 01-Mar-13 23:07:18

Hilda, I work 2 days a week, so would the plan is that between several family members, those 2 days a week would be covered, at least for the first year, and that DH is actively trying to look for a better job, or a job with better prospects. We just can't afford to pay someone to help me in my days off.

DH currently works flexi time from home which would be no problem, but is planning on changing jobs before would try so he would be back in an office.

ImperialBlether Fri 01-Mar-13 23:09:09

I'm really sorry, but I'm another who thinks it would be better to love and where possible help care for the other children in your life rather than have your own children. Physically, for you, I think it's too risky. Financially, if your health suffers or if your baby was ill, then you couldn't manage. The biggest problem, though, is the health of your potential baby. I just couldn't go through a pregnancy thinking there was a 50% chance of him/her being really ill. I just couldn't.

Life can be great without children. I know that's not a comfort when you want a baby so badly, but really it's true. My friends who have chosen to not have children have happy and fulfilling lives. It's completely different, I know, for those who have lost a child.

LivingProof Fri 01-Mar-13 23:09:34

Ah, apologies, I misunderstood when you said screening.

Good luck with the decision.

EverythingsBeachy Fri 01-Mar-13 23:09:55

Job wise for me, it is possible to change to a more manageable job in the future, but its kind of a one way career path I am on now, and will be manageable I think for ever if I can get there, something that I have spent 12 years of my life on so far, and I think I will be good at it come the end product

ImperialBlether Fri 01-Mar-13 23:10:42

But OP, a child with Down's Syndrome doesn't tend to suffer pain. Yes, there can be problems with their hearts which involve operations, but on a day to day basis they are not in pain.

LadyPessaryPam Fri 01-Mar-13 23:12:25

NO

EverythingsBeachy Fri 01-Mar-13 23:13:01

I think the trouble is, that the only people who I have ever come across with no children is my father. Yes that sounds stupid, as he obviously has a daughter! But he let when I was little (not disability related as it was not picked up then) and got married again and lives in another country. They live very selfish lives and have no time for their families, parents, siblings etc. I just do not know anyone else without a child. A few with step children, but again step children that live with them and are brought up as their own. So it's hard to see that we could be happy and involved with others and not end up like my dad

Pictureperfect Fri 01-Mar-13 23:15:09

I've not read the second page of this but another thing to consider is having a baby and having help during the day. I know some people with EDS or similiar conditions who have had a baby and have carers/PAs either provided by social services or funded themselves. It works well for them but must be heartbreaking at the same time

EverythingsBeachy Fri 01-Mar-13 23:15:57

My DH is happy to have a child with my condition, but would not want a child with downs as he feels they would suffer more, as he watched his aunt with very severe downs lead a tormented shortened life, whereas sees me happy and managing. Everything is relative I know, and I know the sticking point is that we know we could bring this condition into a child. I've spent most of my adult life thinking about passing it on

maddening Fri 01-Mar-13 23:16:45

Btw you sound like you'd make a wonderful mother.

I think it is stage 4 I remember really about so that is what I was picturing.

Is there any chance you could becoming stage 4 ( pardon my ignorance - don't know if you get one type of eds or if it can worsen? ) ?

Can you speak to other parents with eds (of a similar stage/prognosis as you) and get a picture of the impact of pregnancy and of their lives with their dc and how it works for them and the levels of support they get etc ?

HollyBerryBush Fri 01-Mar-13 23:18:56

Downs is something that happens, it can't be predicted, it isnt hereditary so using downs as an example isnt the same as knowing you have a 50% probability of having a child with a genetic condition.

You have posted here, asking for opinions. I am a mother, that will colour my opinon. You wont like my opinion - personally I couldnt knowingly bring a child into this world knowing it will suffer a genetic condition, have a disablity, potentially be my carer. Sometime s you have to make a responsible choice in life rather than acquiesce a need.

Agaion, sorry, its not what you want to hear.

EverythingsBeachy Fri 01-Mar-13 23:21:46

maddening no I'm stuck with type 3, its DNA related, so your type doesn't change, and I could only have a child with type 3, it would change its type in any offspring.

holly thank you for posting, I really do want to hear different opinions, if I had decided to go ahead and get pregnant anyway, I wouldn't have posted on here for advice as wouldn't have needed to iyswim?

mum382013 Fri 01-Mar-13 23:21:58

i have eds type 3 and so do all 3 of my children (girls). I had my kids before i knew i had it, i had no symptoms until i had a car accident and now i;m badly affected. My youngest (from birth) is badly affected as the middle one (at puberty) but eldest not too bad. I would never have another child after seeing how mine suffer. They often sob themselves to sleep with pain and its only going to get worse. I feel guilty. but no-one can make that choice for you. If you can get onto the DDD study they may be able to isolate the family gene and have ivf selection. thats what im hoping my kids can do.
its a hard decision and you have my sympathy, im glad i dont have to make it.
xxxxxxxxxxxxxxxxxxxxx

Xiaoxiong Fri 01-Mar-13 23:22:33

I'm sorry to sound a warning note but I really wouldn't bank on family. As we have found to our great sadness family has a way of changing their minds and attitudes when a child comes along - sometimes for the better but sometimes for worse and in our case, totally out of the blue and overnight sad

If it was just a matter of juggling annual leave to cover short term childcare if that happens, then fine, but if you can't afford childcare, home help on your days off, and also cannot do things like lift into a carseat or feed them I would be very concerned about what would happen if family members let you down.

I had my appendix out when DS was 4 weeks old and couldn't lift or carry him for weeks afterwards. It was hell - if we hadn't had live-in help on top of DH taking two weeks off I don't know what we would have done. I can't think of any way equipment can be modified for lifting a newborn eg. from a pram into a carseat, but perhaps this exists.

I do feel very sad for you and your DH, you sound so lovely but just going off your description of how your disability would cause you difficulty with day-to-day care, I have to say I would do everything possible to prevent having children unless I won the lottery and could afford live-in help 24/7.

I feel like such an absolute shit now and am only able to say this to you behind the screen of internet anonymity. If I was your friend I would be 100% supportive of whatever you decide and do what I could to help short of moving in myself but I wouldn't have the balls to say something which must be so deeply wounding to a friend.

EverythingsBeachy Fri 01-Mar-13 23:23:14

P.s. maddening, I didn't really expect anyone to have actually heard of it, so really don't mind that people don't know what my condition is, it's rare even for doctors to I ow about it more than a few sentences worth. So impressed with all the knowledge!

mum382013 Fri 01-Mar-13 23:24:15

But im very glad i have my girls. xxxxx
good luck xxx

mum382013 Fri 01-Mar-13 23:25:19

we see Prof Grahame. you need a genetics consult i feel. xx

Gosh I'm sorry but I wouldn't have a child. The risks to you are not small and the potential risks to the child are too large also

Jeez I wish I was we'll enough and i would have a baby for you, I'm so sorry, what an awful situation x

mum382013 Fri 01-Mar-13 23:28:49

preganacy made me worse but i didn't know it! i thought i had ME after glandular fever and flu. the sleepless nights were really hard too. but no really bad symptoms until the accident. some people get better during pregnancy though. i have oestoporous of my back due to eds so be aware of that and the effects of pregnancy on your back xx

EverythingsBeachy Fri 01-Mar-13 23:30:02

xiao you hit the nail on the head about my friends and family, which is why I wanted to post here. I wanted the truth that anonymity brings, regardless of whether it is shit or not, so please don't feel like a shit! Because I really need to know what people think, rather than just the "you'll find a way to cope" regarding the car seat thing, I reckon I could get a baby into the car seat if it was in there, but then I am happy that I wouldn't go anywhere on my own much anyway. Feeding wise I reckon bf lying down is completely doable. DH already wants bath time as his, and I could manage nappy explosions by washing them in the tummy tub. But saying all this I have not had the experience of doing it day in day out

mum thank you to replying, I wasn't diagnosed until teens when went down hill, I have 3 siblings who all don't have eds, and my mother was only diagnosed it retrospectively when I was, but doesn't see it as a problem for her, and she says she would have never not had me, so I can't really talk to her. I've not heard of the DDD study, could you send me some details? I didn't think it was possible to identify the family gene, that would be such a step forward if they are working on it

EverythingsBeachy Fri 01-Mar-13 23:32:19

mum have seen prof Graham privately, as completely out of area but only once, he gave me the fact sheet on pregnacy and eds/hms and just said it was up to me.
did see a geneticist when first diagnosed, but everyone is of the opinion that because it is known to be dominant, 50 % inheritance not screen able etc, no point seeing them again

Fleecyslippers Fri 01-Mar-13 23:33:25

My personal experience is of a family member with type IV (vascular) so am probably biased, but seeing what she went through and the ultimate outcome, I really, really couldn't take that risk. i know it's something that her parents wrestled with but ultimately the risks were just too great.

I hope that you have a family if that's what you truly want, but I think it would not be a path that I would chose.

EDS/any other disability/perfect health - really at the end of the day nobody can make this decision for you.

I think this is entirely between you and your DH. People more disabled than you sound have made good parents, and people healthier than you are have chosen not to have children.

I understand the yearing for a child v well. Equally I think a life can have meaning and purpose in the absence of procreation.

So, yes, YABU to ask as this as this is the kind of life decision that is totally, uniquely yours wink. V best of luck whatever you decide in the end.

mum382013 Fri 01-Mar-13 23:34:01

each family will have a differnt group of genes responsible for the eds type 3 so if they can find yours you can have ivf selection. Our genetist is dr ruth armstrong at addenbroookes cambridge. the DDD study is run there i think. they use research microscopes to look at the genes small structure and identify the genes. please feel free to pm me. xxx

mum382013 Fri 01-Mar-13 23:35:28

info to understand eds
http://www.ncbi.nlm.nih.gov/books/NBK1279/?report=printable

mum382013 Fri 01-Mar-13 23:35:54

arrrgghh linky not
worky!!

HildaOgden Fri 01-Mar-13 23:36:27

You say that your father lives a selfish life....and that seems to be true.However,he could possibly argue that he is living his life the way he chooses,and is deliriously happy with the choices he has made.(I'm not in any way defending him deserting you,I'm just pointing out that he may view his life far diffferently than you do).He could argue that he is happily settled with his soulmate,and feels no need for other relationships (again,Im not defending him).What I'm saying is that different horses,different courses.

There is nothing about your posts to say you would isolate yourself off from close relationships....but plenty in them that says,whatever the rationality,you want a child.

What you've asked us to do is help you decide if you should.I think most people are saying,on balance,is no.That must be incredibly difficult to hear...but please take it on board as it is given....as the advice from women who already are mothers.It's a bloody hard job at the best of times...full of demands,and full of guilt (if you work,you feel guilty...if you don't,you feel guilty....if you have 'a life' you feel guilty...if you don't,you feel guilty on another level...it really is a 'no win ' role sometimes!!)

Having a child seems like the be-all and end-all when you don't have one.Raising one is a different story.Raising one who is being born,knowingly,into a very difficult situation.....well,I'd imagine that would bring a whole lot of problems that you haven't even begun to imagine yet.

I hate to be so negative.I completely and utterly understand broodiness.Buy you asked for honest opinions.And my opinion is based on 15 years of parenting experience (both the ups,and the downs)

cafecito Fri 01-Mar-13 23:37:13

You need to have genetic counselling

You could have pre-implantation genetic diagnosis

How would you feel about having a child with a donor egg?

You could pay privately for screening, doula, nanny (if possible)

I would not say 'no' outright but I would say, that you should try and minimise the risk to the child by trying to see what screening you can get. If the child has EDS, then it is not ideal. But to those saying 'it's not fair' - well, that child has a life, so you get into deeply ethical territory if we start apportining fairness and rights to life to different people- is a disabled person less worthy of being alive? no. is being dead better than being alive with an illness? probably not. is never being conceived the same as being dead? surely some life is better than no life? but is causing pain and suffering bad? yes.

then you really need to think realistically - can you manage this? in terms of pregnancy on your body, and day to day practicalities.

good luck with everything x

redplasticspoon Fri 01-Mar-13 23:37:41

I agree with others that this is not a decision which anyone else can make for you.

What you need to think about is how you would cope? You say that you will have difficulty caring for the baby, so who will be around, and how much can you really rely on them?

How would you cope with having a child who was also disabled? Both practically and emotionally?

mum382013 Fri 01-Mar-13 23:38:38

http://www.ddduk.org/
ddd study xx

EverythingsBeachy Fri 01-Mar-13 23:39:23

fleecy if I had type 4 I would not even be contemplating this.

mum had a google for the DDD trial, think as I have a diagnosis, and am not a child any more, we'll physically anyway, that i would not qualify! Unless they are trying to specifically identify the gene for eds?

hippo123 Fri 01-Mar-13 23:39:35

To be honest I don't see how you would cope, physically with the demands of bringing up a baby / toddler / child without an awful lot of help. Babies quickly grow into stroppy toddlers and then hyper kids, I can't see how you could, physically , keep up. That said where there's will there's a way, but your dh needs to realise that he will have to be very hands on, and you will have to pay for extra help. The genetic issues wouldn't bother me as much, like you said you don't wish you hadn't been born and have plenty to give. However kids are hard work, physically, you don't often get that's perfect kid holding your hand etc, often I end up Carrying mine screaming and kicking smile. I wish you every success whatever you decide, there's no easy answer.

mum382013 Fri 01-Mar-13 23:40:24

if they dont find your gene defects then there is no pre birth selection. you can't tell often until much later even adulthood sometimes. some people have eds and have no problems like my cousins. Also autism is highly represented in eds so our pead says

mum382013 Fri 01-Mar-13 23:42:03

thats a point hadn't though about that everythingsbeachy. sorry. do get a genetics consult though and ask.

mum382013 Fri 01-Mar-13 23:43:23

our genetist was quite hopeful they may be able to find our genes.

EverythingsBeachy Fri 01-Mar-13 23:44:35

Sorry, cross posted mum!

Posting on here has given me a few more things to think about, that I hadn't really thought through and I really am great full for that. I know DH will be great if we did, as he knows he would have to be very hands on, even discussed him taking a share of the maternity leave, him decreasing his work hours when my job improves etc. but then I know he would rather have a working me, than a worse me just to get a child, and there is no question of him leaving if we don't, so I am very thankful for him and not having to make that choice, that i might loose him

mum382013 Fri 01-Mar-13 23:45:27

another point to make is that an eds child needs a lot of lifting even when older and i have huge problems doing it. but only you can make that choice, and i dont evny you it. I'm not sure what i would do.
its something i am talking through with my girls too but i hoping ivf will solve it for us.

EverythingsBeachy Fri 01-Mar-13 23:46:01

I only have 2 cases in my family, me and mum, maybe grandmother, but no longer with us, so the start of the tree so to speak.

EverythingsBeachy Fri 01-Mar-13 23:50:05

Thank you for all your replies, I'm not running away, just going to bed, thanks again

mum382013 Fri 01-Mar-13 23:51:22

so am I im knackered and the pain is driving me mad tonight
and all mine dont sleep well so will be up at least 3 times

Xiaoxiong Fri 01-Mar-13 23:59:04

My heart really is breaking for you here, I think you would make a wonderful mother but you have been dealt a really rough hand in life and I just don't think it will be worth it. I haven't even addressed the issue about whether you might pass this syndrome on, my opinion really is based solely on the practicalities.

My godparents are both wonderful people, both childless and are hugely important in my life as quasi-parental figures - I wouldn't discount the huge fulfilment you could find role in your god children's lives. It won't ever be the same but it will bring different pleasures I think.

cantspel Sat 02-Mar-13 00:00:11

With your heath problems and the risks to any possible baby i would say No.

Have you thought about adoption but of an older child? Maybe of one 7 + who would not need so much hands on care but still needs a loving family?

EverythingsBeachy Sat 02-Mar-13 00:02:51

cantspel that was the only one suggestion from a friends that wasn't the bog standard, you'd be fine, that if I adopted a child that was toddler or up, it wouldn't have the condition and wouldn't be as physically dependant. But don't know if we would qualify for adoption, but I must admit I've never tried to find out properly

NewbieT Sat 02-Mar-13 00:05:57

^ but people find out all the time that they will have a child with downs, or so,e other genetic abnormality that will mean a reduced life span for their child and they are still brought into the world and loved^

Very true . And sorry, I cross posted about caring responsibilities before your reply addressing that issue.
Very few people have a perfect setup for starting a family (too poor, no partner, no home, too young, too old, you name it), and it is never the perfect time, for anyone, and that is without throwing unpredictable factors or illnesses or conditions into the mix. All we can do is get on with it and deal with it as best we can, with whatever life throws at us. I don't mean to sound flippant , it's a huge decision but don't be guilted into thinking you're being selfish for considering having a child, least of all by anyone on here. Your DH sounds like he has a realistic perspective on your condition and much better knowledge than anyone here, and if he would be willing to have a child with it having seen you experience it (and there's an equal chance they may not) that counts for a lot, maybe you should trust that opinion . Wishing you all the very best x

cantspel Sat 02-Mar-13 00:06:41

I dont see why you wouldn't qualify but you never know until you speak to your local authority.

You clearly have a lot to give a child and i am sure somewhere out there is a child who would love to be your son/daughter.

DoubleLifeIsALifeHalved Sat 02-Mar-13 04:21:11

Prof Pope at Northwick Park does EDS genetic councelling btw.

My question was going to be do you have type 4, but I see you don't, so makes it less cut & dried. My sister had type 4 btw.

Btw is NOT true that you wouldn't qualify for help as alot of councils don't use salary in that way. I have alot of help as a disabled parent (with eds), & I get it as it helps me be the best parent I can and fulfil my needs as a parent, and ds s needs as my son. It works ok and he ll never be my carer, that's something you can determine & plan for.

I would love another child, (not in a position to so is theoretical, no h)... But I am not sure I could or not. I am lucky to have a healthy non eds boy, I wouldn't want him to go through what I have had to... BUT I'm not sure he would have to as its diagnosed much earlier and we know what to do to protect them now. And then I think of the posts I read on here from parents of children with eds... And I know they go through alot.

I wonder if there is a way to find out percentages of how eds 3 presents... As its that that matters most I think. I would love to know what % of children have really acute symptoms from early childhood, what % onset on adulthood (& therefore might be alleviated by better early management). That would be my deciding factor.

MusicalEndorphins Sat 02-Mar-13 06:25:02

My ds's both have EDS 3, and the one in a relationship doesn't want to risk passing it on to a child, so he and his DP plan on adopting.
It doesn't sound like you can physically care for a baby, but you may be able to cope with an older child whom you don't have to pick up. If this has been mentioned, please excuse me suggesting it, as I haven't read the entire thread. Best of luck in whatever you decide to do.

chris481 Sat 02-Mar-13 06:53:20

A few people have made the link that conceiving (or not) a disabled child is equivalent to deciding whether the life of an actual living disabled person is worthwhile. This is wrong, a person who is in the world is not equivalent to a sperm and egg before fertilisation, or even immediately after, for that matter. A decision appropriate for one is not necessarily appropriate for the other.

HollyBerryBush Sat 02-Mar-13 07:04:27

Finances too. You talk about your husband dropping hours etc. Don't think the same level of state help with regard to tax credits etc will always be there. And dare I even think it, the most stable and loving of marriages can crack under pressure - the scenario of a wife and a child with a disability, plus financial hardship doesn't look good to me.

Fatherfluffybottom Sat 02-Mar-13 07:31:29

I have a lot of sympathy for you but just wanted to say I think you are possibly underestimating how relentless and demanding parenting is (most people do before they have children, I know I did).

I have no disabilities but have found having children the hardest thing I've ever done. I love them absolutely but the demands never end and I have a healthy 12 and 4 year old. Second what was said above, you may not get a compliant child who will stay with you when out etc. Both mine were/are physically very difficult to handle.

Also I really did expect my parents would be very hands-on and a big support. That didn't materialise at all. Everyone was working or just not interested. (They help my sister with her dc endlessly though, but that's another thread). I ended up with very bad PND which is still very much affecting me.

I understand how you feel and the longing but in your case I would concentrate very much on my own health and be a fantastic auntie and godmother, loved and adored by the children in my life. Maybe the best of both worlds?

Hope I've not said too much or upset you. It wasn't my intention at all and I think you are very courageous. Wishing you all the best xx

Mama1980 Sat 02-Mar-13 08:05:36

Hi first I think you sound very brave and I totally understand wanting to canvas subjective opinions. My situation is very different but this is my experience I had a car crash 5 years ago when pg had my ds1 at 26 weeks, I was left with multiple health issues, last year I fell pg again accidentally and was advised to terminate due to risks to both our health. Ultimately I couldn't and my ds was born at 24 weeks, he is doing great but I am still in hospital confined to a wheelchair. It is unlikely I will ever walk normally again. I am a lone parent with 3 children depending on me. Thankfully I have a wonderful supportive family but do I regret my decision even knowing what I know and the answer is no. Being a parent for me is the easiest thing I have ever done, I manage fine 95% of the time and they are my reason for fighting.
But would i have planned to have a second birth child and the answer is honestly no, simply due to the impact it has had on my dd and ds1 lives short term at least we don't know what the future holds.
I wish you all the best x

DreamingofNutella Sat 02-Mar-13 08:32:22

I have the genes for a genetic condition too - Huntington's disease. Whilst it doesn't affect me now, it will in the future. I have a 50:50 chance of passing it on. We tried pgd ivf at guys twice to stop passing it on. It didn't work for us. Bad luck and my eggs just couldn't cope with the procedures. I didn't think I could adopt- it used to be that I would have been banned because of the HD. But we went to a meeting and whilst the lady couldn't guarantee anything (she wouldn't have guaranteed anyone from a 10 min chat), she was very hopeful and said it wasn't a no. We were really keen on going for adoption but decided to have one more go at the ivf first. We went to Barcelona, changed tactics and had ivf via egg donation. I got pregnant! Childbirth was not straightforward, i had a back to back delivery, a 4th degree tear and now have some minor, manageable bowel issues. Whilst i can cope now, i do not know if this will make things worse with the HD when it starts. Our DS is 18 months now. It took three years, a near breakdown for me and a lot of counselling but we got there and he is worth it.

I know it's not the same situation but I thought it might help. I would never want to impose my experiences on you, it is yours and your husbands decision, no one else's but maybe there are more options than you realise? Egg donation, pgd ivf, adoption could all be routes forward. But I would say that counselling was vital for me to get through. Maybe a counsellor could help you to explore your options and figure out what you want?

A long post! Sorry! Good luck in whatever you decide.

Ellypoo Sat 02-Mar-13 08:35:38

Haven't read all your replies yet but my DH has EDS and there is screening - we had a cvs test done with our 1st pg to test to see if the baby had eds.

Also, EDS has now been approved for PGD with ivf so it could be possible to have a surrogate with your egg, and the embryo could be tested before implantation.

moisturiser Sat 02-Mar-13 09:08:11

OP I'm in a similar boat, though as yet am not married so it's more of a theoretical issue for me.

I have agonised over this question for the last ten years; I adore children beyond anything and I would make a good mum. I have decided I'm not going to have children, and I've only really made up my mind since becoming an aunt and godmother. I look at those close to me who have children and think about what would happen if they rang and asked me to look after even one of them for the week. I just couldn't do it. With help all day from someone else I'd manage but unless I win the lottery that is too expensive. I would be so concerned about having a child with EDS, which might sound awful but I believe that life has huge worth and can be fantastic even with a horrible condition, but I know I couldn't cope day to day and I wouldn't want my child to see me suffering as I frequently do.

It is heartbreaking. I'm getting around my grief by spending lots of time with other peoples' children, volunteering and I hope to get a pet one day that I can love. It isn't ever going to be ok that I can't have them, but c'est la vie. Have a look at the organization 'Gateway women' which is for women who can't have children. They've helped me a lot.

mum382013 Sat 02-Mar-13 13:31:17

there is screening for all types of eds except type 3 unless they find your particlar gene combination. We know as we have had a genetics consult.

mum382013 Sat 02-Mar-13 13:35:26

Testing

The biochemical etiology of EDS, hypermobility type is unknown in most cases.

Molecular Genetic Testing

Genes. Heterozygous mutation in TNXB is associated with EDS, hypermobility type in a small subset of individuals. However, skin hyperextensibility, easy bruising and other hematologic manifestations are not part of this phenotype (see Genotype-Phenotype Correlations).

Evidence for locus heterogeneity . A mutation in TNBX is not identified in most individuals with a clinical diagnosis of EDS, hypermobility type. Thus, the etiology and genetic locus/loci are unknown in the vast majority of cases.

Research testing. Serum tenascin-X protein testing is available on a research basis only.

mum382013 Sat 02-Mar-13 13:40:06

sorry just read that back and that sound like im being bigheaded and aggressive. blush sorry

mum382013 Sat 02-Mar-13 13:43:09

I will say the pressure it puts on a family and reltionship makes it very hard. My marriage after 15 years is breaking up. he cant take the pressure and is behaving badly. not easy. sad

mum382013 Sat 02-Mar-13 13:45:30

Can you tell ive had a bad night? sad

Hello.

I have EDS (hypermobility type but am about to push for a change of diagnosis to classical).

I didn't get a diagnosis until after I had DS. I wont lie, I had to leave my job about 8-12 weeks in as I couldn't walk without walking sticks and being in agony, my hips dislocated and subluxed umpteen times every day and the joints that I usually had dislocations with got so much worse.

I landed in hospital many times with heart and blood pressure problems.

I had lots of threads on here, the whole time was agonising and I have never recovered.

I was induced at 38 weeks due to the pain and SPD and other problems, they gave me an epidural which I wasn't keen on as anasthetic normally doesn't work on me and wasn't allowed to move even though the epidural failed as I thought it would, the MWs didn't understand my condition (it was queried at this point and definite dx of hypermobility) and kept using a wedge thing to put me on my side, the pain from my hips subluxing the entire way through labour was the most agonising thing I have ever felt, I would have killed myself if I could and begged DP to knock me out.

I went from 5cm to fully dilated and fully effaced in about 30 minutes (very common in EDS) but no one would believe I needed to push, eventually when they realised I was and was pushing the MW kept pushing my legs right up and making me put my neck on my chest, the pain was horrific and I begged for forceps.

Had episiotomy and forceps and DS was born fine but then needed stitches... they all tore out, I was in agony for weeks and weeks and still have ragged skin.

I have a suspected cystocele and rectocele and have been told that even if I didn't at this point I will need surgery for it at some point as it is so common with the EDS.

I have greatly struggled with the fatigue and breast feeding was painful because of the way I had to sit.

I have problems getting about with the pram, picking DS up, sitting feeding him for periods of time etc.

I do do it though, it fucking hurts and it isn't easy. DS seems fine so far but the Drs have noted that he has clicky joints.

Money is a struggle because I can no longer work and rely on benefits and I have needed constant physio since he was born.

I am now pregnant again (contraception fail) and really scared, I am now on anti depressants as I was starting to feel suicidal at being pregnant again, I am so worried for the future.

Sorry that's a bit of an essay...

EverythingsBeachy Sat 02-Mar-13 14:33:29

schro thank you so much for sharing what your life is like, I must admit that when I was pregnant before, my DH was really worried about me, and a bit relieved when I had the miscarriage. That it would give us more time to really think about this. The whole no legs in stirrups thing, and every time I watch obey, I keep saying to my DH, I can't put my chin on my chest to push! Will they consider a cs for you this time, was thinking that might be better, although knowing how my sutures have fallen out from other surgeries makes me think that isn't a good choice either.

mum see, you had a bad night, I woke up with my joints several times, but not with children, I cannot imagine coping on less sleep and take my hat off to you.

ellypoo can I ask what type of eds your DH has and you had CVS for?

You're welcome. smile

They put my legs in stirrups even though it was in my notes not to... I begged them to stop but she wouldn't listen and said "well they're in now so you're fine, it's only SPD". I think I had a rotten MW though.

I would be allowed a CS if I liked but am having a home water birth as this is agreed that it is best for me. I can guarantee the pool to take the weight off my joints and there is no temptations of epidurals etc and if I have a speedy labour then there is no risk of me trying to get to hospital.

I will have a very detailed birth plan and it is already in my notes that I can't hold stitches and am to have another anasthetic review, I am guessing this is in regards to if I need a CS, if that's the case I will most likely be given a general anasthetic as it's too risky otherwise.

I don't think you should entirely rule out the option of having children, you are doing the right thing learning as much as possible beforehand.

Also with children inheriting it, if you know young then you can take steps to minimise the impact. Lots of core exercises to try and gain joint stability etc.

MrsDeVere Sat 02-Mar-13 14:50:48

You may want to contact www.dppi.org.uk and the Disabled Parents Network for more information.

MrsDeVere's idea is a brilliant one. You can get help from certain organisations and some social work departments for adaptations in the house and support groups for disabled parents.

I was offered it and wish I had taken it.

maddening Sat 02-Mar-13 19:35:12

Schro - does tens work for you? I know o don't have eds but the tens machine designed for labour was effective when not in the pool.

Phineyj Sat 02-Mar-13 20:50:53

You mentioned that you don't know anyone without children (which seems incredible...really...no-one at all?)

It might be an idea to go out of your way to meet people without children so you can get an insight into what life might be like without them, what possibilities there are etc. There would be positives as well as negatives.

propertyNIGHTmareBEFOREXMAS Sat 02-Mar-13 21:11:28

You are in a very tough position. In your shoes I would not have children. I really could not knowingly take that 50% chance of passing an identified genetic condition to my child. I would concentrate on living the happiest and fullest life that I could and would enjoy spending mine and dh's money and time on each other. All the very best whatever you decide.

EverythingsBeachy Sat 02-Mar-13 21:51:17

phiney I do have friends who have not yet started their family as I'm not that old, but all of them are plannig on having children in the near future. I meant friends who either have children, or are planning on children. I know some might not In the future, but all friends either already have children or want them. Mums generation, or family friends, everyone has children. I know of no people who did not have children by choice or circumstance. Incredible I know.

Pease tell me where I should go to actively seek people with on children, are there places where they / we are banished and I can go and say, hello, please be my friend?

Thanks for the previous suggestion of gateway woman, had a read this afternoon

Thanks mrsdevere had a look previously at the boards looking for equipment, but did not contact them regarding help available.

jjuice Sat 02-Mar-13 21:51:58

I don't have EDS only HMS and found pregnancy and childbirth quite a trauma. The epidurals didn't work and the final stage for my dd lasted about 5 hours. I also had excruciating Obstetric cholestasis with both although I don't know if it's connected.
Both my DD and DS have hms although to a lesser extent and not diagnosed as they only give diagnosis if you have suffered pain for x amount of time in x amount of joints. I wasn't diagnosed until I was nearly 40, up until then I was just the bendy woman.
My DD plays high level sport and it breaks my heart when she gets an injury solely because of her lax joints and I can't even begin to tell you scared I was when she had to have teeth out because her overbite was huge, luckily my dentist was patient and made sure that she was completely numb unlike my previous bastard dentist who insisted I couldn't feel him yanking bits of broken tooth out of my gums

What I am trying to say is that it's hard when it is yourself going through pain but when it's your children it is a thousand times harder to bare.

www.hypermobility.org/forum/index.

The forum is amazing and the members so helpful.

I wish you luck whatever decision you make.

EverythingsBeachy Sat 02-Mar-13 21:59:01

Thanks jjuice were you diagnosed before your had your children? Bet you felt you'd missed out of the fabled lightening fast labours!

Already on the forum. There was a thread in there about deciding whether to have children, but no-one looks like they've replied in about a year!

mrsdevere rebooked at the ddpi website, it looks like its been revamped, will have a read of all the publications and see which ones would be worth buying

EverythingsBeachy Sat 02-Mar-13 21:59:31

Sorry, I'm guessing you were diagnosed after having children?

MrsJREwing Sat 02-Mar-13 22:01:25

I have only read the OP.

I have EDS and didn't know till recently. I have two children both also have it.

I would not have another child, I am in my thirties, I couldn't bear to risk another child go through this.

It's hard enough caring for children when ill, harder when you are all ill, never mind hospital's and physio. I was told to create folders for the children by the pead, who scratches his head over each new diagnosis that gets added to the list each time he see's the children.

I think adoption or a surogate and egg donation are a great idea. Best of luck.

jjuice Sat 02-Mar-13 22:13:14

Yes I had already had my children they are 15 and 12 my DD is more affected than DS.
What a shame nobody has replied on that thread- maybe make another? I have spent hours reading on there but never really posted and in the end my Dsis had to order me to stop going on there as I became convinced my DD had Marfans. She is 6'1" and has very long arms and legs, can circle her thumb and forefinger round her wrist with bags of space, had a huge overbite etc etc- the more I read the more I shat myself I convinced myself there was something wrong with her heart and she would just drop down dead. I am still not sure whether to have her tested but when I look at pictures of people with marfans she doesn't have the features.

I agree with MrsJR maybe surrogacy is a better choice.

I really feel for you it's such a tough decision.

RattyRoland Sat 02-Mar-13 22:17:58

Sorry to say I think I wouldn't have a child in your situation. The risks to both you and them are huge. Best of luck.

EverythingsBeachy Sat 02-Mar-13 22:26:30

Jjuice, I am partial marfanoid, or incomplete, can't remember. So have some of the traits, but not all the nastiness associated with it.

Thanks again for everyone replying.

Am planning on asking at our gynae appointment whether surrogacy is an option on the NHS. I know that a few trusts will do one cycle, but you have to pay for the surrogates ivf parts and then you still have to pay the surrogates costs, which are usually 10 grand, so we are nearly certain that that is completely it for us due to cost. If we won the lottery would definitely go down the surrogacy route and mothers help etc. have actually started playing the lottery again weekly in the hope!

MrsJREwing Sat 02-Mar-13 22:35:50

I think a donor egg is the way to go, I don't think having EDS is a barrier to being a Mum. It's a lot of strain caring for unwell children when you are unwell to, and the guilt is a killer, that you gave them EDS.

maddening Sat 02-Mar-13 22:43:45

If you do want to go down the surragacy route could you save up £10k in 3-4 years? Your job would be better placed as you say earlier and you wouldn't be worried about the impact if pregnancy on your body?

Can surrogates do it with just your dh's sperm and their own egg?

EverythingsBeachy Sat 02-Mar-13 22:53:43

maddening yep surrogates can do that, called straight surrogacy and is a lot cheaper than host surrogacy where it is your eggs used in the surogate. The 10 grand is just the surrogates expenses, you still need to pay for all the ivf costs on top of that, plus the agency like cots fees etc, so they say its about 25 grand. Even 10grand we could not realistically save over 4 years.

My DH is happy for us to have a child and for it to have eds, but he cant get his head around having a surrogate with the surrogates egg and his sperm.

mrsjr the guilt is something that I cannot get DH to understand. He thinks it'll be fine, but I know that it will be me that gave it to them, and my fault that they are in pain etc. but he says my mother would have still had me knowing what she knows now, so he doesn't see that as issue

MrsJREwing Sat 02-Mar-13 23:01:00

Tell your DH that I think it is a third to half of EDS families have false allegatiins of child abuse and are reported to Social Services, get him to confirm with EDSUK how bad it's got since BabyP changes. So on top of being unwell you have to deal with the fear of false allegatiins or false allegations, mostly mads by professionals.

EverythingsBeachy Sat 02-Mar-13 23:30:53

I was on try child at risk register when I was younger, like toddler to age 7 because of bruising dislocations etc, and DH knows this well. I'd have thought that would have been better when you have a diagnosis yourself and possibly one for your child? I naively assumed that you would only get reported pre diagnosis?

MrsJREwing Sun 03-Mar-13 00:08:46

It's happening pre and post dx now, there has been a spike since BabyP.

SirBoobAlot Sun 03-Mar-13 00:34:13

Honestly, in your situation, I wouldn't. I'm sorry. Much love to you.x

DoubleLifeIsALifeHalved Sun 03-Mar-13 00:51:55

Marfanoid traits I think it's called yes?

I think alot of EDSers were falsely diagnosed as marfans a couple of decades ago when EDS wasn't really heard of.

Reading your thread, and thinking about my own situation, and others on here... I think it all boils down to how you would feel if your child was in pain almost all the time? I think (for me at least), I can square everything else but this, and I don't have an answer.

All the other stuff you can plan for, be on top of, go in prepared etc...
Good antenatal care, adult social services support planning etc...

I'm not saying the rest is easy btw, just not the absolute question for me.

As flr the rest:

Good mat care is hard to get but better if you go in with eyes open : i had c section & they dislocated my hip whilst I couldn't feel it & for months disbelieved me when I tried to get help for it etc. But wasn't diagnosed at the time. You need specialist care before and after birth, and for a long time as even if the pregnancy goes relatively well, your body won't recover in the same way, without some pretty major rehab.

Adult social care has been a massive and continuing battle, but I have been successful in getting a sunstantial amount of hours care as direct payments and this allows me to survive and be a good parent (alot of hrs compared to other people I know BUT I've sweated blood for every single one and am still not at a point where I can subsist without making my health worse- closer to it this last month than any so far though). You have the advantage over me that you have a husband who can pitch in (mine left us when I got really ill). Conversely you will have some pressure for your husband to become your carer at the expense of his salary and own health, so you d need a plan in place to prevent this.

I also work part time still (though a massive strain it's vital I do), social services are actually supposed to support disabled people to parent, and work, and not demand you give either role up in order to access care money - though I'm sure alot of councils will try and tell you differently! I'm saying this as you seemed to dismiss social care as an option as you both work.

MrsJREwing Sun 03-Mar-13 10:11:49

Double, has you care been sorted now?

Phineyj Sun 03-Mar-13 11:51:42

OP, in answer to your question up thread I'm not sure about specific places to meet childless people -- I would hope one meets them in every walk of life and that it's not as ostracising as all that.

It took my DH and I a long long time to conceive and in that time I had to avoid people I knew with young children at times, because it was too painful. I became aware I had quite a few friends and acquaintances without children, sometimes because they had no interest, sometimes because they hadn't met the right person, because they were gay/lesbian (I know that doesn't rule it out but it certainly makes it more complicated), and in the case of older women, fertility treatment wasn't available so they'd had to make the best of it.

I don't know how old you are but I was born in the 70s and the stats show 25% of women in my generation will not have children so I think your situation in not knowing anyone at all without them is unusual (also something like 1 in 5 couples have issues with infertility, so it may be that not all your friends who want them, will eventually have them). It is undoubtedly making things more difficult for you to be surrounded by people with children and/or who are actively planning them...of course they will want to encourage you to do the same!

This is getting rather off the point, but in case you decide against, I wanted to reassure you that I, at least, know happy and fulfilled people without children and that I believe my DH and I would have found ways to live our lives if we had had to give up on them, which was looking quite likely until a year ago.

It feels a bit odd putting this point of view on Mumsnet, but there you go.

Phineyj Sun 03-Mar-13 12:37:52

Just a thought OP -- have you considered fostering? It seems to me it would help with some of your issues -- your finances sound a bit marginal (saving £10k over 4 years is about £200 a month, which is not a lot when you consider costs that could arise from you having a baby) and foster parents are paid. There may even be children with EDS who would benefit from your expertise?

Sorry, I hope my post above didn't come across that I was suggesting you just give up on children. It was more that my own experiences made me realise there are a lot of ways to live out there and there is such a massive emphasis in society on having children, particularly for women, that sometimes the fact there are lots of people out there without them doesn't register.

Phineyj Sun 03-Mar-13 12:40:18
EverythingsBeachy Sun 03-Mar-13 18:52:31

Phiney, thanks for the link. The £10k is just the surrogates fees, total cost including ivf is £25k, currently managing to save £200 a month so used to increased costs if we do have a baby, but saving £25k over 3 years is not doable. I am time limited to having the baby within 5 years by my job to qualify for maternity pay/adoption leave etc so if not started any kind of ivf or baby process in 3 years this will be too late, so cannot save £700 a month currently or I think ever

EverythingsBeachy Sun 03-Mar-13 18:54:57

double well done on getting you care. It does seem the case that they can't comprehend you needing help and wanting too work, its either work and have no help, or don't work and get loads of help.

I think I could manage every bit of pregnancy / surrogacy / adoption / child care etc, except as you say, when your child is in pain, and you know it's from you. The other thing I feels selfish about is knowing how much having that child could send me downhill

MrsJREwing Sun 03-Mar-13 19:06:42

Everything, the hormones of pregnancy and BF do make you worse.

It's not just your child in pain. At present my two have bowel issues, my 14yo is bowel incontenant. Thyroid issues, sight, hearing, pain, physio, referral to osteo Dr made, geneticist, OT, sleep apnoea, and still more tests to be done for spine, check for chairi, heart, pots etc. That's a lot of dr's, tests and app's when your ill too.

mum382013 Sun 03-Mar-13 19:11:01

we used to do 8 a week at one point. sad so i couldnt work really and do that. sad

mum382013 Sun 03-Mar-13 19:12:41

i also would have never said my oh would have an affair either but now we have to do it by ourselves. we all have to work together to be ok. the pressure has caused problems in what i thought was a good reltionship.

MrsJREwing Sun 03-Mar-13 19:16:30

My exh left days after the kids got HMS dx, he then told people I exagerated their health problems, bastard!

mum382013 Sun 03-Mar-13 19:50:26

mine tried to knock me over and was banging the door at me very hard as he was "frustrated". thanks for that. that and the young bit of stuff from work really helped us.

mum382013 Sun 03-Mar-13 19:51:15

i think he didnt want to be "stuck" looking after us all.

MrsJREwing Sun 03-Mar-13 19:56:55

Yes, that's it exacyly, they are wimps and ow think they are so much more special than us and fall for the lies!

mum382013 Sun 03-Mar-13 20:17:59

wanted me when i could loook after him but when the shoe is on the other foot

aamia Sun 03-Mar-13 21:14:43

All I can do is tell you what I would do - what you do has to be your decision. When you have a child of your own, their happiness/wellbeing is THE most important thing in your life. I am broody as anything for another, but if I was told there was a 50% chance of the next child having something that would cause them pain every day of their lives, then no way would I have them. I worked with severely disabled children for a while and saw so much frustration/pain/misery. I would not chance that just for my own happiness.

I WOULD adopt though. You could give an older child a chance of a home, one who would not otherwise have that opportunity. Once children are beyond a certain age, no-one wants them. I have seen older children (primary age still) adopted, and they were so so so relieved to have a family. Security at last, parents who would love them whatever. It turned their lives around. Ok it wasn't easy, but what they needed was what you could do for a child - love, emotional support, care, a home and a family. They were old enough that your physical issues would not have been a problem. Two children turned from disaffected, sad, troubled individuals - into happy, open, contented children. Love does amazing things.

If you are sure you want a baby, stay with a friend with one for a while or have them bring the baby to you. Actually have a go at looking after one for a day (with friend there in case you need them obv) and see if you can. They get pretty heavy before they can do anything for themselves. I have a disabled relative and she could only lift my DS until he was four months old - then he was too heavy to even be on her lap...

EverythingsBeachy Sun 03-Mar-13 21:25:36

mrs and mum sorry your partners were so crap. How long had you been with them before you were diagnosed, got worse etc? Do your children have eds worse than you? If people seem to be having children that are more affected than them then it would be a straight no for me, I think.

aamia I'm happy to adopt and older child, but my DH thinks it wouldn't work unless the child was young, max toddler age so he wouldn't want to adopt an older child. When staying with friends I can do everything in an adaapted way, it just hurts and I pay for it for a few days, but the thing is now I can rest and get a better night sleep

Thank you again so much everyone for replying. I am still so unsure what to do, swinging completely from it'll be fine, ill get pregnant myself, to maybe surrogacy would be the only way, to no we shouldn't have a child, even an adopted one as I would feel worse than I do now. Then I feel guilty for that last one, proper selfish. Then I want to get pregnant next month again.

We have been discussing this for years, and thought we had made the decision to have a child, now I just don't know. It's all I can think about

mum382013 Sun 03-Mar-13 21:38:50

15 years dx 1 year ago. kids much worse to be honest. youngest really bad sad
but if you took me back to before kids even knowing what i know i wouldnt not have them. they are in pain but their lives have meaning, probably selfish but i cant imagine life without them

Floggingmolly Sun 03-Mar-13 21:39:14

It just hurts and I pay for it for a few days. But with your own child there will be no time to rest and recuperate between bouts of childcare; it's constant...
Plus you would need to factor in the possibility that your health would deteriorate even further from the level you're currently experiencing, how do you really imagine you would be able to cope without full time help?

EverythingsBeachy Sun 03-Mar-13 21:47:14

Just been looking at some adoption websites, maybe ill do the first contact thing just to see. I know DH would rather have a child that's ours first, then surrogacy that's ours, then adoption. He wouldn't want a child that's his and a surrogates.

floggin I know, the rest of that sentence was meant to come across as, but at the moment I know I can rest afterwards, but I wouldn't be able to with a child. DH would do all the child care during the evening and night feeds, and have the baby on his side of the bed etc. he knows this is what it would mean for us to have a baby, and men do do it all alone if something unfortunate happens to their wife's. I know my DH would do this, even if people on here would say, we'll he says that now, just wait. My friends agree that he would be very hands on

mum382013 Sun 03-Mar-13 21:49:29

the constant nights are hard for me but you will have a dh to do it so you can rest. I think you will be fine to look after a baby/child with your dh help but i think the issue is possible eds in baby and how you will cope with pregnancy.

HildaOgden Sun 03-Mar-13 21:55:39

Even more than how you will cope with your EDS (and yes,I know your hubby will be on board)...how will your child cope with having it?

I really think you have to weigh up how much your broodiness is blinding you to that.You can make an informed decision about taking on the pain/suffering of a nine month pregnancy,the child wouldn't have any choice on being born into a life that sounds really so very painful (I have to admit,hadn't heard of EDS before but googled after reading the brave posters (yourself included) describing the reality of it).

MrsJREwing Sun 03-Mar-13 23:17:15

Yes my dc are worse than me too, sorry not what you want to hear I know.

Ten years, he left months after I was dx, days after dc dx. Not in their life for years, turned his family against us with his lies, so not a lot of support for dc, just me and my Mum in their lives, and she isn't a lot of help.

I didn't know my symptoms were unusual, Dr's didn't understand them and I ran myself into the ground by my late twenties.

I didn't know I had EDS/HMS when I had my children in my early twenties.

My advice to my dc is not to have more than two, have them young, don't bfeed past a week, have a c-section and have IVF to breed the gene out. Hormones and age make you worse.

DoubleLifeIsALifeHalved Mon 04-Mar-13 01:21:35

Will write more tomorrow, shattered now, you know how it is!

Yes OP, I have taken on ss and (for the moment), come out victorious! I have little support from my own family but a old family friend came out of the woodwork to do battle with me & for me... With doctors, ss, banks, work you name it shes fought for me to help me be able to live. I got very comprehensive legal advice on social services and it was necessary as there is so much institutional disabled parent / disabled professional discrimination. It's staggering, councils own rules and processes can directly contravene legislation and the people working in ss won't even know that.

BUT I do, and my aim is to make sure everyone else does too, as you can get help if you fight hard enough.

The help I get takes into account my need to pace - which is so fundamental to avoiding the spiral of deterioration eds brings. If I'd got it in place when I needed it, my life would be very different.

So that's the positive side of daily management as a parent!

DoubleLifeIsALifeHalved Mon 04-Mar-13 01:30:26

Ps my h hit me when I begged him to help me. Just to join the club of eds + abusive husband club (oh the joy, that there are so many of us).

Waves at MrsJREwing!!! Long time to squeak! I have a couple of good tempory helpers in place and currently interviewing for permanent, but I have one amazing permanent person who does a nannying/ mothers help day time role and she has just stabilised everything. Yay! Keep your fingers crossed that I can find people for the rest (evenings & pa role). Put it all on hold after friend helped get stop gap people in place as injured my neck doing hydrotherapy in December. Hideous pain on using neck which is a bit of a bugger. And increase in autonomic rubbish. How's you? R u feeling any better after all the trauma you went through end last year?

EverythingsBeachy Tue 05-Mar-13 20:37:16

Thank you again for everyone's replies, I didn't think I would get many responses, but I can see that is has been quite emotive for some people at the thought of me choosing a 50% chance of passing my condition on. It wasn't something that I had really considered, as was something that I thought with better management would be a lot better than me. But because I am not a mother already, I do not know how I would feel, so all the posters who told me how guilty I would feel, and how it wouldn't be fair on a child, really did Give me something to think about.

Also thanks to those who suggested adoption. It was something I really thought we wouldn't qualify for, and because we were capable of getting pregnant I really felt that I was depriving my DH of his offspring if we choose adoption. To be honest I just picture a child with his colourings and looking like him and thinking that would be the best thing in the world.

Anyway, I didn't reply yesterday because I think everything hit me, and I spent the whole of last night crying. Proper heavy sad sobbing in dh's arms. I think I realised that pregnancy isn't something I can do myself. And that mean letting go of the image in my head of this baby looking like DH. To me it would have been the most beautiful baby ever. So we talked about adoption, and how I couldn't put it together with the image I had. My DH is happy with adoption, it was always me who didn't want to consider it. Unfortunately this is because through work I see the women who get their children removed by social services, how they behave during pregnancy etc, and couldn't get past the lasting physical damage this could cause. But this is something I've now changed my view of and will consider it.

DH thinks we shouldn't decide anything soon as its only been a few months since we were actively ttc and miscarried. But maybe we should look into adoption. We did agree that it would be beneficial in a way to ahem an older child, but agreed we wouldn't want a child older than 2. I know most children aren't adopted until after 1, but it will take me a while to get used to the fact that you don't have a baby from new, that you can't just sit there bf and holding your own newborn. But DH says we'll soon feel like they've always been with us, and it won't matter, I suppose I felt like they'd never feel like "ours" if we didn't have them from birth. But then I know a few friends who would not go back and do the first year of parenting again, so maybe its a win-win situation :-)

So ill wait and see what consultant says, see if surrogacy is available on the NHS. But I think I know at the moment that I couldn't go through pregnancy. Thank you again to everyone, its been a hard post to write, and a emotional week, but I really think posting on here helped, because of mine and yours anonymity, that you could say what you really feel, not just my friends who would tell me I'd be fine, it'll be ok

mum382013 Tue 05-Mar-13 20:43:59

(((((((((((((hugs))))))))))))
i meant to say i get direct payments to help me parent too.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Smartiepants79 Tue 05-Mar-13 20:53:09

You are a very brave lady with what sounds like a truly lovely husband.
I would definitely give yourself some time to come to terms with this descision, in a way you will be grieving the loss of something you have wanted for a long time.
Just remember, the adoption process can be a long one so get started as soon as you feel ready.
Good luck.

MrsJREwing Wed 06-Mar-13 10:08:41

Can you tell me how direct payments to help you parent works?

I actually think a five year old would be a good age to adopt, at school and past carrying pushchairs and tantrums dry at night. Chatty etc. Also as a disabled parent whole point is not to adopt an ill child, you would know by that age if there were health issues mainly.

jcscot Wed 06-Mar-13 10:45:01

I can't tell you what to to do but I can tell you a bit about what we went through. I have EDS 3, diagnosed by Prof Graham when I was pregnant with my first child (but not my first pregnancy) but with clear symptoms dating back into childhood.

EDS carries a greater risk of miscarriage (I was told) and I have lost five children that way - four before my eldest was born and one in between my middle and youngest child). I have had three successful pregnancies all of which were very different and my children are now aged 6, 4 and 2.

Firstly, let me say that I am not as severely affected as you.

My first pregnancy was fairly straightforward until about six months and then the pain in my hips, pelvis and shoulders became horrendous. Needed crutches etc.

My second pregnancy was worse - crutches from about 8 weeks, and bed rest from 20 weeks, hospitalised at 30 weeks.

I had seven months of physiotherapy after that birth.

My third pregnancy was much better - I had physiotherapy support from 6 weeks and I was in much better shape and lasted without crutches until 28wks.

All three were born by ECS and I bled profusely with them all - only the first was touch and go. Recovery was slow and draining and I didn't breastfeed as the physio told me this was one way of keeping the relaxin in my system. It didn't help that I am a de facto single mother as my husband is in the Army and only comes home for a weekend once or twice every month. I live near my parents and they were my help and and support.

Only my middle child has shown any signs of EDS and was diagnosed at 20mths. He gets daily physio and struggles with pain and subluxations - he appears to be worse affected than me but he has a great attitude and seems to pick himself up and dust himself off. He didn't walk until he was two and half and needed a lot of handling and that has been a real strain on me at times as I struggled to handle him. He's now four and when he needs lifting and carrying it can be very difficult and will only get more so the more he grows.

I have permanently damaged my hips and pelvis and I found pregnancy very tiring and a slog, especially when I had toddlers to look after.

My youngest child shows no signs of EDS, neither does the eldest (although they all had clicky joints and were all closely monitored). Only time will tell how my middle one adapts.

I wouldn't change any of it but it was emotionally and physically draining - repeated miscarriages are not fun and I hate knowing that I've passed the condition on to my son.

Good luck with your difficult decision - I'm sure that you will find that whatever you decide it's the best for you.

EverythingsBeachy Wed 06-Mar-13 18:02:59

Jcscot Thank you for telling me how your pregnancies went. It really is useful to know. I really don't think I can go through pregnancy now, but I still feel guilty for making that choice. That I am choosing not to have a child because I will be in pain, and that seems a really selfish decision to not want to be pregnant.

But I definitely absolutely want a child, 100% so will have to work out adoption or surrogacy. In my head no surrogates would choose us, because I technically can get pregnant, whereas all other people choose surrogacy because they can't get pregnant, iyswim.

Even though I'd can't find any research on it, I have heard a few people say that mc are related to the eds. so so know on that one.

Chunderella Wed 06-Mar-13 19:37:15

It is absolutely not selfish to decide against pregnancy because of the pain it would cause you. There's nothing wrong with wanting agency over your own body. Unfortunately we are fed a lot of the mother as martyr bullshit from so many sources, it's very pervasive. Pregnancy is a big thing for any woman to put her body through, even a very healthy and robust one. Before seeing that you'd made a decision, I was actually going to post saying that in your position, I don't think I'd risk my health.

((((hugs))))

You sound lovely and v caring and bravely have been very honest with yourself.

IMVHO whatever you decide ('own' pregnancy/surrogacy/adoption) you would not be 'selfish' in my book.
There is a strong biology imperative to want your own/your DH's biological child. 'Tis was reproduction is all about.
However, wanting to protect yourself/any potential offspring from the pain and problems that EDS can bring can be an equally strong motivator.
And lastly, I think chosing to adopt and give a child that would otherwise likely have a life with changing carers or who-knows-what-circumstances, is truly the most amazing gift any adult can give a child.

One of my cousins is adopted and many random strangers used to comment on how he looked 'just like his father' grin simply because he and my uncle are both brown-eyed and dark-haired. People see what they expect to see. He always knew he was adopted (as did the rest of the family) and when he was a teenager his parents offered to help him seek out his birth family and he decided he did not want/need to find them. I never think of him other than family.

You are strong in so many ways and very brave - you'd be a fabulous mother when the time and circumstances are right x.

EverythingsBeachy Fri 08-Mar-13 22:11:09

Thank you all, stepped away from the thread for a few days as really struggling with the enormity of realising we will not have our "own" children, even though we might be technically able to. It's all I have been able to think of, and really sad.
DH thinks he would prefer adoption over surrogacy that was only genetically his. I agree with this, just know that I will miss having that new born baby, whether it is ours or not.
But off to play with my gorgeous god daughter on Sunday, so looking forward to that immensely

cory Fri 08-Mar-13 23:32:44

The new baby stage doesn't last very long in any case: having a toddler and an older child is a much bigger part of your life. And an adopted child will be just as much yours for having come into your life a little later. My parents had 3 biological children and adopted their last (as a toddler). We are all their own children, there really is no difference.

EverythingsBeachy Thu 14-Mar-13 22:05:12

Thank you for that cory.
Have spent another week thinking hard. DH still thinks he would be ok with a child having eds, me I just don't know. Think surrogacy will be ruled out. DH still would prefer adoption over straight surrogacy. Also checked with work, adoption leave is exactly the same as maternity leave, but surrogacy you don't qualify for any leave at all. So that's that then. Thinking about adoption it makes sense, no passing the condition on, but then who knows what genetics the child you adopt has? I know after a while your adopted child will feel like yours. It's just something I never had to think of, you always imagine what a child that is half yours and half your husbands will look like.

A friend suggested egg donation, so I carried the child but there was no risk of passing on the disability. But I still think pregnancy is out of the question. DH doesn't like that idea much either. Sod's law is that what ever happens, they will identify the gene and we could have had pre implantation screening etc. but that could be 5, 10 years or never. But pregnancy would still be an issue.

Suppose we would need to decide what would happen in the future if we got accidentally pregnant, as that would show our decision.

If anyone's still listening to my rambles, thanks for listening

mum382013 Thu 14-Mar-13 22:12:33

The more i think about it the more i would still have my kids. i get direct payments to help me get them presentable for school and to help get them to bed and a cooked meal. my sw is fab

mum382013 Thu 14-Mar-13 22:16:12

got a bone density scan on tuesday sad

EverythingsBeachy Thu 14-Mar-13 22:30:06

Thanks mum I'd always thought we would just have our own child, and we would get them an early diagnosis and more help, but the strength of feeling on here for us not to have a child with a 50% chance of a disability really made me think.

Good luck for you bone scan

ouryve Thu 14-Mar-13 22:32:49

OK, late to a 2 week old thread. I don't have a severe form of EDS, but I do have HMS. After a lifetime of injuries and pain and seemingly inexplicable oddness, I finally had this diagnosed 18 months ago, after I'd started to develop arthritis in a lot of joints to the point of losing mobility.

This was after 2 difficult pregnancies and births (actually, DS2's birth was easy, just too fast) I gave up work at 16 weeks the first time because I was utterly exhausted, fainting all the time and in constant pain. Yes, both boys have inherited it from me. DS2 was a very late walker and has had to wear piedro boots for a while 9he refuses them, now, but he's still like custard) and DS1 is very stiff, like I was as a child, and suffers lots of joint pain - he's a boy with a high pain threshold, oddly enough, so we take the pain seriously.

Both the boys have ASD (yes, that runs in my family, too) and I find keeping up with their physical needs incredibly exhausting. I'm lucky that I can walk and walk for miles - it appears to have been my saving grace - but if one of the boys turns to wet spaghetti, I'm stuck. If DS2's unwell, he loses muscle tone and needs his buggy to walk more than 100yards or so. I'm finding that increasingly difficult to push around our hills.

All that considered, only you can decide. If you do decide that you can't cope with a pregnancy (the birth can be made easier on you, so you can ignore that) then think about whether there are other ways that you want to make a family which bypass the high dependency years.

EverythingsBeachy Thu 14-Mar-13 22:43:37

Thanks ouyre, you're not late, I just keep ignoring this for a week, then coming back.

EverythingsBeachy Thu 14-Mar-13 22:53:03

Can I ask specifically what was difficult about your pregnancy and births?

mum382013 Thu 14-Mar-13 23:16:29

fatigue was bad in mine, and pelvic pain as well as joints. had chronic fatigue very badly after all births. middle one was very fast too. I have the problem now that i have one 9 and one 11 in wheelchairs and they cant self propell because of wrist joint problems and no electric wheelchair atm and i need a wheelchair too, so how do we go out?

mum382013 Thu 14-Mar-13 23:18:07

i had c section last birth and had epidural which caused problems. could still feel it then too much left me numb for days. no feeling of needing a wee after c section too, that took 6 months to sort of come back too. still not great now

ouryve Thu 14-Mar-13 23:18:20

My first pregnancy was exhausting - I was constantly fainting, sleeping non stop and had to give up work really early because I simply couldn't cope and I was in so much pain on top of it all. I also bled lots and it looked like I'd had a miscarriage at 6 weeks, since i was bleeding heavily with clots, but it turned out a long 10 days later, that I was still pregnant (he still has me worrying on a regular basis!) About 6 months in, my blood pressure skyrocketed and I retained loads of water. I actually went really overdue and had to be induced, but he wasn't looking where he was going (again, nothing's changed) so the actual delivery involved rotational forceps. It took a long time for my coccyx to feel right again.

DS2's wasn't so severe, symptom wise, but he was placenta previa. That had resolved by 36 weeks and he was born 4 days post dates, but I went straight from the occasional manageable contraction to him falling out into the toilet.

The most traumatic thing about each birth was the bleeding. Both times I held onto the placenta. Despite DS2's precipitate birth, I ended up needing a spinal and surgical removal of the placenta. Once it came out, I haemorrhaged. The first time, I needed a transfusion of 4 units, the second time, 3. After the first transfusion, I ended up with fluid overload and was readmitted to hospital for almost another week because I had fluid on my lungs.

mum382013 Thu 14-Mar-13 23:18:56

i need a tandem wheelchair like my old buggy!

mum382013 Thu 14-Mar-13 23:19:57

i bled losts too, in pregancy and after birth

mum382013 Thu 14-Mar-13 23:20:33

made the fatigue worse

ouryve Thu 14-Mar-13 23:23:13

Mum - I had some horrible bitch of a midwife criticising me because it wasn't like I'd had a CS or anything, when I couldn't walk at all after the forceps delivery.

ouryve Thu 14-Mar-13 23:24:14

She's the same one, who when I was admitted pre-birth with hypertension, commented that they had some properly ill women so she couldn't give me any attention.

mum382013 Thu 14-Mar-13 23:26:08

nice midwife! going for midwife of the year award then!
poor you x

Logically, then in your situation I probably wouldn't have a child. I would feel guilty forever if my child inherited a serious genetic problem from me and I imagine my partner's family would blame me for it too. I have thought about it a lot as my friend has BiPolar disorder and I know she has decided never to have kids so they could never experience the life she has to live. Then there is the marital strain of your partner having to do a lot of care for the child.

But having kids isn't logical, is it? It's a selfish thing - we don't have kids for their sake, we do it for ourselves. SO you need to talk over the pros and cons with your OH and see what you both feel is right. Best of luck if you go for it!!!

MrsJREwing Fri 15-Mar-13 08:53:55

Our, If I were you I would go to see Prof G, you do know HMS/EDS are considered the same thing now. You do know Autisim and hypermobility are linked? The fainting stuff sounds like EDS related autonomia? I think you saw an old fashioned Rhumy and need to see someone else. The Department of Health considers healthcare professionals to accept HMS/EDS to be the same nowadays.

EverythingsBeachy Fri 15-Mar-13 14:16:12

Thanks our
I suppose with adoption I have to let go of the I image of me being pregnant, a new born, breast feeding etc

ouryve Fri 15-Mar-13 14:52:37

I got some quite intensive input when I was diagnosed, MrsJR and I'm definitely managing my symptoms a lot better than pre-diagnosis. I don't think my treatment would have been any different for a different name.

Thanks for the recommendation. Appointments and follow up in London are pretty much out of the question, mind.

Everything - good luck with whatever you decide. It's a huge enough decision for anyone, even without all the things you have to consider.

MrsJREwing Fri 15-Mar-13 19:25:58

Our, great news you feel better.

EverythingsBeachy Thu 28-Mar-13 17:24:29

Hello all. Think we have decided that me being pregnant is not the best idea and not going to happen.
I am still getting bouts of proper sobbing, but think this is more now that the decision is made I am sad that my child won't look like DS, that I feel like a failure and its my fault that I can't have a child. But DH is still fab and doesn't think this at all. But this sadness passes as I know that we have made the decision to have a child, no matter how we get this child.

So the decision is surrogacy or adoption.
With surrogacy I get no maternity/adoption pay, just unpaid leave only. Also this is way expensive, I suppose with taking out loans/remortgaging this is possible. DH prefers adoption, as cant get his head around surrogacy. But with surrogacy I know that the baby has had a good start, not been exposed to drugs in users. Also we have the baby from new born. But I don't want to pass the eds on, whereas DH is ok with this, so surrogacy would be just Dh's. I know straight surrogates are really rare, so whether we would have to use an egg donor or not I don't know. DH thinks if it is not mine, he doesn't see the point in it being his and just his, so adoption is preferable.

With adoption, it doesn't have the option of bankrupting us. The baby won't have eds, but it is more likely to have more problems due to alcohol or drugs during pregnancy. Also baby is more likely to be an older toddler, or pre schooler. Which whilst better for me to look after them, and not have the worry of can I look after a baby, there will be possible problems with bonding and missing out on them being tiny babies. DH thinks this is fine, that after a few weeks with them they will feel like ours, and we won't miss them being babies. Also I will get paid adoption leave, the equivalent of maternity leave.

Just don't know which will be best?

ariane5 Fri 29-Mar-13 08:22:37

DH and I have EDS hypermobility type.

We have 4 dcs severely affected as they all have EDS and unfortunately other medical problems too (some related to EDS others unrelated).

My pregnancies were difficult and I had 4 caesareans.

However, I would not change my dcs for anything, we have a tough time and some days are exhausting.there is support out there my dcs have many, many appts physio/hydro etc etc to keep on top of things. DH struggles a lot with pain and daily knee dislocations which does impact on hoiw much he can sometimes help care for dcs so it is exhausting.

Please PM me if you want to talk. I am more than happy to help if I can but won't go into too much else here as have been flamed before for having dcs knowing they would be unwell.

EverythingsBeachy Fri 29-Mar-13 13:50:47

Pm'd you

Babycino81 Tue 16-Apr-13 15:15:10

Hi,

As someone who cared for their parent when I was a child, just do it. You will find the strength and ability to cope between you and your husband and the benefits will be that as long as you don't rely on your child, they will develop their independence early on.

My mum did not rely on me which, strange as it soundsade a massive difference. She always sought outside/family help which meant that I always had opportunities to do activities, play with friends etc and that is where I think the difference between being a parent and a burden comes from.

Luckily through different treatment etch my mum no longer needs care but I don't l

Babycino81 Tue 16-Apr-13 15:17:33

stupid phone posted early look back and resent her or wonder what I missed out on etc because I didn't. Could you and your husband afford some outside help? Or do you have family and/or friends who could help?

Don't let your illness dictate your future, I wouldn't be here if my parents had made the decision to have me based on my mums physical health.

Good luck with whatever you decide xxx

Buddhagirl Tue 16-Apr-13 17:50:32

Do it agrees with babycino

EverythingsBeachy Sun 05-May-13 19:43:37

Hi, I just wanted to come back and update you and to say thank you for everyone who took the time to reply. it really did help us think things through. It's been a very emotional couple of months.

We met with my gynaecologist, and he advised us not to go through a pregnancy. The same as my local rheumatologist. I know that this isn't the case for all people with eds, it is just where I am at and the problems with eds has given me.

We have decided to try surrogacy, but not using my eggs. We are going to look for a traditional surrogate. I decided that if I was not capable of carrying a child, then I could take the chance not to pass this on.

I know this is an emotional topic for all, and equally know some people with eds who can't go through pregnancy and have decided they couldn't look after a child either. But I know with a little bit of help we can look after a child. So the next chapter of our life's is starting, and we are actively looking into finding our surrogate.

sunlightonthegrass Sun 05-May-13 20:43:52

Oh everythings I pray you find someone and that you can be a mother x

maddening Sun 05-May-13 20:56:05

so glad you are moving forward - making such a decision is tough so getting past that is brilliant - wishing you luck with the surrogacy smile

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