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

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Choice of having children

OutOfStripes profile image
12 Replies

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

12 Replies
Fuunycat profile image

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!

L1lgem profile image

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

cyberbarn profile image

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 profile image
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?

OutOfStripes profile image
OutOfStripes in reply to happytulip

Hi happy tulip, thanks so much taking the time to reply.

I’m sorry to hear of all you’ve been through. I can relate slightly, when my health was on the brink of demise my fiancé at the time left me, so I returned home to be cared for by my Mum 24/7, medically retired also.

If it’s any consolation, it sounds like we (both) had a lucky escape from said ex’s. If they disappear and the first sign of trouble then that’s not the kind of man either of us deserve anyway! :) I know how heartbreaking that situation can be though and the added stress on top of our struggling health issues can be enough to tip even the strongest.

I relate to you a lot on that sentiment, I feel that I’d love to meet someone and have a child with etc but for me too it’s fantasy land- I don’t think I’d be able to physically care for a child, playing outside, bike rides, all that you mention. The important stuff. The stuff I guess I’ve always dream of.

All my friends are having their 1st,2nd,3rd babies, all my siblings have children. I can barely manage to be the Auntie I’ve always wanted. Struggling with noise, can’t pick them up, they’ve only ever seen me lying down in a hospital bed in a dark room. This wasn’t the plan….

I guess part of me feels it would be selfish of me to bring a child into the world to fulfil my maternal needs, when I know the potential difficulties and risks. But then I feel so awful and guilty for thinking that. I’m just stuck in a moral dilemma in my head, and feel that time is running out. It’s such a difficult thing to try and come to terms with.

Sending love Xxx

OutOfStripes profile image
OutOfStripes in reply to cyberbarn

Thank you so much for taking the tim to reply and apologies for the delay. That’s similar to my Mum, had her own health issues and family history etc, just didn’t have a name for it, until I was recently diagnosed and she has since received a diagnosis that joins all the dots over the years for her too.

I guess my main struggle is because I DO know my diagnosis, and the implications. I have always wanted a family, even in primary school I remember wanting to be a “Mum”- the only dream I’ve ever had. But now my own health is in such turmoil, I’m not sure if 1. I’d be able to carry full term 2. If I’d ever be well enough to look after even myself let alone a baby (currently bedbound requiring 24hour care) and 3. My worst nightmare would be any child of mine either having to care for me, or have the same debilitating level of illness and disability as I know only too well. It’s a whole argument I have with myself on a daily basis and I guess I’m just struggling to come to terms with making a “decision”. Age is slowly dripping through my fingers and I worry that by the time I (hopefully) make any form of recovery it will be too late for me anyway.

Do you think if you had known about your full health picture years ago your views on family may have been different?

You’re so right though, none of us knows for sure what life has in store for us <3

I’m sorry to hear of all you’ve been through. Sending love to you and your son Xxx

cyberbarn profile image
cyberbarn in reply to OutOfStripes

Yes, I am pretty sure I would have still gone ahead. Genetics is complicated and for many things, they skip generations, are very variable and so on.

I had a friend who had a visual impairment, she used to say her rods were buggered, she struggled to see in the dark or low light. She had her first child, and he had a different VI, his cones were buggered so he couldn't see in bright light!

They were put forward for genetic counselling but the waiting list was long. In the mean time she felt pregnant again, and gave birth to a child that had no VI at all.

When they finally went to the genetic counselling appointment they were told that there were genes on both sides of the family for these two different VI problems, and that there was a high chance of any further child they had to have one or the other or both.

They were so very glad that the waiting list for the genetic counselling was so long because if they had been told this before she got pregnant the second time she would have opted to adopt and they wouldn't have had their beautifully all seeing little boy!

They did adopt a third child in the end rather than having more natural babies, but it does show that we just don't know what genes will come out in the wash!

Jay66 profile image

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.

OutOfStripes profile image

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

honeybug profile image

Hi OutOfStripes 😊🌿🌸🦋

My heart goes out to you for your suffering and limitations.

I can relate to your comorbidities for I have them too.

I have 61 diagnoses and three pending. Only a few aren’t inherited/genetic.

Cancer has killed 98% of my family/relatives.

It killed my only son at age 12.

I decided not to have any natural children that I would certainly have passed on most of what I have. This was the best decision I could have ever made as I could not bare witnessing them living the existence I have.

It’s hell on earth in my experience.

I understand/empathize with you that you have such a maternal drive/instinct. I do too.

I felt it was selfish to inflict my children with my life sentences of comorbidities just to satisfy my maternal desires.

I decided to shower my love on others…unofficially adopt other people as my children. As I got older so did my newly ‘adopted’ children.

Now I’m like you immobile but praying/hoping for a miracle recovery that most likely will never come.

So while you are in your immobile stage ponder the pros and cons of having children either naturally or adopted and let it help you decide.

Keep in mind that this undertaking will be for their lifetime.

I hope this was at least a little helpful.

I was just a few weeks from adoption and after doing the pros and cons I stopped the proceedings.

Best for that child absolutely no regrets.

Sending you gentle gentle hugs 🤗 fervent prayers 🙏🕊 and love 💗.

EJ. 😊🤗💗😘🙏🕊🌿🌸🦋

PS. I used the same pros/cons aid in deciding not to get a fur baby…dog.

MaggieHP profile image

I’ve only just spotted this, but hopefully some of this may help.

Do bear in mind that EDS is a variable condition, so even if you have a child which inherits it there is no guarantee that he/she will have it in the same way.

I didn’t know I had EDS when I had my two children (although there have been suggestive symptoms - not least hypermobility - all my life). Of my two children one appears to have inherited it but in a very different way. He’s not as flexible (though he has inherited the pronating ankles that both I and my father have - and they are very prone to spraining and leading to issues further up the leg) but he has always had some coordination and proprioception issues, which I don’t have so much. Once we knew I had the condition (I was finally diagnosed in my early fifties) some of his issues were explained. He already had orthotic inserts and exercises to help with his ankles and, given that he was at a university with a strong sporting tradition, he sought out help from the physios there. They gave him exercises to help with the proprioception problems. That said, he was still known as the student who could trip over the pattern in a carpet.

As far as your ability to cope with a child is concerned, I really do suggest you seek out advice from the relevant professionals starting with a geneticist. You might also want to discuss things with those who are responsible for your healthcare: your GP and also any specialist doctors who are overseeing your EDS etc.

Nero13 profile image

Hi,I never really wanted children so feel its easy for me to say but I know I'm definitely not going to have any. I couldn't risk passing on and 50% chance is quite high. My symptoms are no where near as serious as yours but on a bad day there's no way I'd want a child to feel the way I do.

I didn't have major symptoms until I was 21 but looking back there were certainly signs all the way back to needing physio as a toddler etc.

I wonder now if I never had the urge to have children because my body knew it couldn't handle that.

I have lovely little cousins and friends with children who I love to spend time with but won't have my own.

Just my view though!

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