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

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

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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.

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

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

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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.

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

Message withdrawn at poster's request.

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.

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

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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.

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

Message withdrawn at poster's request.

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


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

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

Message withdrawn at poster's request.

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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