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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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hhhhhhh Fri 01-Mar-13 23:01:36

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HildaOgden Fri 01-Mar-13 23:03:14

'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?

hhhhhhh Fri 01-Mar-13 23:04:41

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hhhhhhh Fri 01-Mar-13 23:07:18

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ImperialBlether Fri 01-Mar-13 23:09:09

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.

LivingProof Fri 01-Mar-13 23:09:34

Ah, apologies, I misunderstood when you said screening.

Good luck with the decision.

hhhhhhh Fri 01-Mar-13 23:09:55

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ImperialBlether Fri 01-Mar-13 23:10:42

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.

LadyPessaryPam Fri 01-Mar-13 23:12:25

NO

hhhhhhh Fri 01-Mar-13 23:13:01

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Pictureperfect Fri 01-Mar-13 23:15:09

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

hhhhhhh Fri 01-Mar-13 23:15:57

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maddening Fri 01-Mar-13 23:16:45

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 ?

HollyBerryBush Fri 01-Mar-13 23:18:56

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.

hhhhhhh Fri 01-Mar-13 23:21:46

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mum382013 Fri 01-Mar-13 23:21:58

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.
xxxxxxxxxxxxxxxxxxxxx

Xiaoxiong Fri 01-Mar-13 23:22:33

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 sad

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.

hhhhhhh Fri 01-Mar-13 23:23:14

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mum382013 Fri 01-Mar-13 23:24:15

But im very glad i have my girls. xxxxx
good luck xxx

mum382013 Fri 01-Mar-13 23:25:19

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

mum382013 Fri 01-Mar-13 23:28:49

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

hhhhhhh Fri 01-Mar-13 23:30:02

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hhhhhhh Fri 01-Mar-13 23:32:19

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Fleecyslippers Fri 01-Mar-13 23:33:25

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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