Choice of having children: Hi there, I... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Choice of having children


Hi there,

I’m a woman of child bearing age suffering greatly with EDS (electric wheelchair, bedbound, variety of comorbidities) I was relatively healthy before, however my life has been significantly affected negatively by EDS and it’s complications. I have always been very broody, maternal, always wanted many children, however now I’m in huge debate with myself internally. Obviously I’m no where near healthy enough to do many basic things for myself at the moment, but do hope to make some recovery at some point. My dream has always been to be a Mum, but even if I ever get to the point of being healthy enough to consider, I now don’t know if I can/should, because 1. I don’t know if I would be able to carry and look after a child physically and 2. I couldn’t begin to imagine putting any child of mine through what I have been through health wise.

I’d be really keen to hear from anyone else having the same thoughts or who has come to a decision similarly. And if you’ve read this far.... thank you xxx

6 Replies

Hello. I genetics student (so please double check my knowledge) but EDS is a dominant gene which means that there is a fifty per cent chance of you passing on the gene. I am also an adopted child, which can be an option but still an extremely difficult route as children in care can have health (both physical and mental) problems. My suggestion is to speak to a genomic counsellor they will able to tell you what you might be able to do. There is a major chance a child will have no problems even with the gene so talk to a proffesional!

Hi I'm a mum of 7 i have eds i had my first child at 17 before diagnosis i always knew i wanted a large family and so i got married and went on to have 6 more 😄 all i can say on this subject is they were the best thing I've ever done it's a very personal decision for anyone and yes you may pass on a dominant gene I've always off and on struggled with my health and back then there were no answers but because I've struggled (sometimes my kids have witnessed my struggles) we all help each other my eldest 2 -25 and nearly 22 have both settled into family life with a child of their own and my 3rd youngest is 19 she is showing symptoms where as none of the others are (aged17,16,14,8) yet but we literally all here for each other apart from my kids dad we sadly grew apart before we new i was pregnant with my 8 year old strangely i was less symptomatic through pregnancy felt it in different ways like my body was like come on ve strong were growing another human here haha but anyway I'm rambling yes individual choice yes you can pass it on but you learn to help them in any eventuality best thing i ever done in my life take care wish you all the very best and good luck x

I had always wanted to be a mother and I didn't know I had EDS when I got pregnant, although I knew I had symptoms. Just didn't have a name for it. But I also knew that my maternal grandmother had severe osteoarthritis and my maternal grandfather had severe rheumatoid arthritis. Also turns out, although I didn't know until recently that that grandmother also had psoriasis. But I still happy went along and had a child. And I would have had more if my husband hadn't left me when he found out I was pregnant, even though he had been trying to get me pregnant for 6 years! My son is actually has worse EDS than I do, but then he also has half his genes from my husband so he has autism too. But he in his own way is a happy chappy and we get on really well.

Even with genetic counselling, none of us knows for sure what life has in store for us. Sometimes we need to take chances and then make the best of life.

happytulip in reply to cyberbarn

This is such a difficult and personal decision to make. My heart really goes out to you.

I have EDS 3 and had a good career. I was planning on having a family with my then fiance. However, I went on to develop lupus which meant that my pain levels were through the roof, my mobility and ability to do much for myself nosedived. I had to be made medically retired from my career which was devastating and the to top it off my fiance left me.

He said that he wanted children with the old me, not the new me. Nice. It was heartbreaking.

Everyone is different. I would love to meet someone and have a child but for me this is fantasy land. The reality is that I wouldn't be able to give a child the upbringing that I would want. I don t mean materialistic things. I mean that I wouldn't be able to just take them to the park or run around with them. Playing outside, bike rides, making dens would all be so difficult and very painful.

At times I have heard a baby cry and I've thought to myself, if that were my baby I don't think I could pick it up right now to comfort it.

Everyone's symptoms are so different but you say that you are bed-bound. I've been there and it's no fun.

It wouldn't be impossible for you to give love, care and attention to a child. A very supportive partner would be vital, but I suspect that it would be the hardest thing you would do but equally the most rewarding.

I'd be interested to know your thoughts?

I didn't know I had eds when I had my one and only child. Childbirth was so incredibly traumatic for me, nearly killing my son, plus all the bad eds things, that I wouldn't have another and in fact when an accident happened I had an abortion rather than put my body through it again.

But at the time I had no idea about what was wrong with me. Looking after my boy was exhausting. If I had known, life would have been much easier.

Knowing about hEDS is not always a blessing though because now you have to make decisions about whether to (potentially) inflict everything you suffer onto your own child. It is very hard.

I would strongly suggest genetic counseling from the NHS service. I don't know what I would have done or what decision I would have made if I'd been diagnosed, but these are life changing decisions whichever way you go, so a full and long reflection on the facts is valuable.

I can’t thank you all enough for your replies, I’m in the middle of replying but struggling with brain fog so will reply as soon as I can <3 xx

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