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.

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

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