to ask for your help to decide whether I should have a child or not? (EDS related)(176 Posts)
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.
pure I am the best god mother, the kind that always turns up with little presents, makes craft things and is happy to sit in the car playing pretend driving with a 3 year old and spending 20mins making the sun roof go back and forth!!
'I think because we both work, that I would get no help with looking after maybe, sure start type stuff etc, but we cannot afford a nanny.'
Apart from anything else....the above comment is something you need to consider very strongly.You both work,but could not afford childcare...so what happens if you did have a baby?Would one of you give up work to become a sahp?Could you all manage on one salary?
Thanks newbie! I really don't see the child as being a carer, and I know it is completely different, as you do not go into pregnancy thinking it will happen, but people find out all the time that they will have a child with downs, or so,e other genetic abnormality that will mean a reduced life span for their child and they are still brought into the world and loved
Hilda, I work 2 days a week, so would the plan is that between several family members, those 2 days a week would be covered, at least for the first year, and that DH is actively trying to look for a better job, or a job with better prospects. We just can't afford to pay someone to help me in my days off.
DH currently works flexi time from home which would be no problem, but is planning on changing jobs before would try so he would be back in an office.
I'm really sorry, but I'm another who thinks it would be better to love and where possible help care for the other children in your life rather than have your own children. Physically, for you, I think it's too risky. Financially, if your health suffers or if your baby was ill, then you couldn't manage. The biggest problem, though, is the health of your potential baby. I just couldn't go through a pregnancy thinking there was a 50% chance of him/her being really ill. I just couldn't.
Life can be great without children. I know that's not a comfort when you want a baby so badly, but really it's true. My friends who have chosen to not have children have happy and fulfilling lives. It's completely different, I know, for those who have lost a child.
Ah, apologies, I misunderstood when you said screening.
Good luck with the decision.
Job wise for me, it is possible to change to a more manageable job in the future, but its kind of a one way career path I am on now, and will be manageable I think for ever if I can get there, something that I have spent 12 years of my life on so far, and I think I will be good at it come the end product
But OP, a child with Down's Syndrome doesn't tend to suffer pain. Yes, there can be problems with their hearts which involve operations, but on a day to day basis they are not in pain.
I think the trouble is, that the only people who I have ever come across with no children is my father. Yes that sounds stupid, as he obviously has a daughter! But he let when I was little (not disability related as it was not picked up then) and got married again and lives in another country. They live very selfish lives and have no time for their families, parents, siblings etc. I just do not know anyone else without a child. A few with step children, but again step children that live with them and are brought up as their own. So it's hard to see that we could be happy and involved with others
and not end up like my dad
I've not read the second page of this but another thing to consider is having a baby and having help during the day. I know some people with EDS or similiar conditions who have had a baby and have carers/PAs either provided by social services or funded themselves. It works well for them but must be heartbreaking at the same time
My DH is happy to have a child with my condition, but would not want a child with downs as he feels they would suffer more, as he watched his aunt with very severe downs lead a tormented shortened life, whereas sees me happy and managing. Everything is relative I know, and I know the sticking point is that we know we could bring this condition into a child. I've spent most of my adult life thinking about passing it on
Btw you sound like you'd make a wonderful mother.
I think it is stage 4 I remember really about so that is what I was picturing.
Is there any chance you could becoming stage 4 ( pardon my ignorance - don't know if you get one type of eds or if it can worsen? ) ?
Can you speak to other parents with eds (of a similar stage/prognosis as you) and get a picture of the impact of pregnancy and of their lives with their dc and how it works for them and the levels of support they get etc ?
Downs is something that happens, it can't be predicted, it isnt hereditary so using downs as an example isnt the same as knowing you have a 50% probability of having a child with a genetic condition.
You have posted here, asking for opinions. I am a mother, that will colour my opinon. You wont like my opinion - personally I couldnt knowingly bring a child into this world knowing it will suffer a genetic condition, have a disablity, potentially be my carer. Sometime s you have to make a responsible choice in life rather than acquiesce a need.
Agaion, sorry, its not what you want to hear.
maddening no I'm stuck with type 3, its DNA related, so your type doesn't change, and I could only have a child with type 3, it would change its type in any offspring.
holly thank you for posting, I really do want to hear different opinions, if I had decided to go ahead and get pregnant anyway, I wouldn't have posted on here for advice as wouldn't have needed to iyswim?
i have eds type 3 and so do all 3 of my children (girls). I had my kids before i knew i had it, i had no symptoms until i had a car accident and now i;m badly affected. My youngest (from birth) is badly affected as the middle one (at puberty) but eldest not too bad. I would never have another child after seeing how mine suffer. They often sob themselves to sleep with pain and its only going to get worse. I feel guilty. but no-one can make that choice for you. If you can get onto the DDD study they may be able to isolate the family gene and have ivf selection. thats what im hoping my kids can do.
its a hard decision and you have my sympathy, im glad i dont have to make it.
I'm sorry to sound a warning note but I really wouldn't bank on family. As we have found to our great sadness family has a way of changing their minds and attitudes when a child comes along - sometimes for the better but sometimes for worse and in our case, totally out of the blue and overnight
If it was just a matter of juggling annual leave to cover short term childcare if that happens, then fine, but if you can't afford childcare, home help on your days off, and also cannot do things like lift into a carseat or feed them I would be very concerned about what would happen if family members let you down.
I had my appendix out when DS was 4 weeks old and couldn't lift or carry him for weeks afterwards. It was hell - if we hadn't had live-in help on top of DH taking two weeks off I don't know what we would have done. I can't think of any way equipment can be modified for lifting a newborn eg. from a pram into a carseat, but perhaps this exists.
I do feel very sad for you and your DH, you sound so lovely but just going off your description of how your disability would cause you difficulty with day-to-day care, I have to say I would do everything possible to prevent having children unless I won the lottery and could afford live-in help 24/7.
I feel like such an absolute shit now and am only able to say this to you behind the screen of internet anonymity. If I was your friend I would be 100% supportive of whatever you decide and do what I could to help short of moving in myself but I wouldn't have the balls to say something which must be so deeply wounding to a friend.
P.s. maddening, I didn't really expect anyone to have actually heard of it, so really don't mind that people don't know what my condition is, it's rare even for doctors to I ow about it more than a few sentences worth. So impressed with all the knowledge!
But im very glad i have my girls. xxxxx
good luck xxx
we see Prof Grahame. you need a genetics consult i feel. xx
Gosh I'm sorry but I wouldn't have a child. The risks to you are not small and the potential risks to the child are too large also
Jeez I wish I was we'll enough and i would have a baby for you, I'm so sorry, what an awful situation x
preganacy made me worse but i didn't know it! i thought i had ME after glandular fever and flu. the sleepless nights were really hard too. but no really bad symptoms until the accident. some people get better during pregnancy though. i have oestoporous of my back due to eds so be aware of that and the effects of pregnancy on your back xx
xiao you hit the nail on the head about my friends and family, which is why I wanted to post here. I wanted the truth that anonymity brings, regardless of whether it is shit or not, so please don't feel like a shit! Because I really need to know what people think, rather than just the "you'll find a way to cope" regarding the car seat thing, I reckon I could get a baby into the car seat if it was in there, but then I am happy that I wouldn't go anywhere on my own much anyway. Feeding wise I reckon bf lying down is completely doable. DH already wants bath time as his, and I could manage nappy explosions by washing them in the tummy tub. But saying all this I have not had the experience of doing it day in day out
mum thank you to replying, I wasn't diagnosed until teens when went down hill, I have 3 siblings who all don't have eds, and my mother was only diagnosed it retrospectively when I was, but doesn't see it as a problem for her, and she says she would have never not had me, so I can't really talk to her. I've not heard of the DDD study, could you send me some details? I didn't think it was possible to identify the family gene, that would be such a step forward if they are working on it
mum have seen prof Graham privately, as completely out of area but only once, he gave me the fact sheet on pregnacy and eds/hms and just said it was up to me.
did see a geneticist when first diagnosed, but everyone is of the opinion that because it is known to be dominant, 50 % inheritance not screen able etc, no point seeing them again
My personal experience is of a family member with type IV (vascular) so am probably biased, but seeing what she went through and the ultimate outcome, I really, really couldn't take that risk. i know it's something that her parents wrestled with but ultimately the risks were just too great.
I hope that you have a family if that's what you truly want, but I think it would not be a path that I would chose.
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