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.

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

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