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.

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

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