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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.

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.

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