Is anyone else worried about their baby being born with a disability?

[Essie3]

I'm really obsessing about this at the moment. No reason to, because the Down's test (for example) came back as low risk etc, and I'm not a high risk pregnancy or anything. But I just worry so much about it. People say I'll love my baby no matter what, but I'm not so sure I would if there was something major wrong. I know it isn't PC or anything to say this.
I'm so obsessed that I'm googling baby movement (mine is quite active) in case that means everything will be fine.

Is this just me? I hate surprises (hence knowing the sex) and maybe the 9 month wait is getting to me or something?

I may have missed it but nowhere in MPD or Essie posts have they claimed that children with disabilites are unloveable, all they have claimed is they are not sure they would be able to love them. I think it is incredible open and honest to be able to admit something like this.

NineDragons...'I did worry about it. In fact, statistically extreme as it is, I even gave some thought to a unisex name we could use if our baby was an hermaphrodite.'

Yay, I'm not alone!

Come to think of it, mine all have unisex shortenings... maybe I'm still not convinced which they are?

To the OP:
Good luck! None of us know quite what we're in for, but most of us cope. And some days we loathe the ungrateful little beasts, however much we love them. That goes for my 'disabled' one and the 'normal' pair, btw.

Essie: just wanted to add that sometimes the medical tests offered can actually foster those worries and lead to a great deal of agonising at a vulnerable time for most women. There is (IMO) an undue focus on the most "common" conditions and getting a "good result", whereas it is clear from many of these posts that lots and lots of conditions are not going to be picked up ante-natally, or (as many have pointed out) situations can arise at birth or after. I think most people were genuinely trying to reassure you that love comes naturally, no matter what. Your life might not turn out the way you planned it, but it will go on.

Sadly, it IS true that for many a baby with a disability is not worthy of the same amount of love and care as one without. When my little boy died I was repeatedly told that (1) there had probably been something wrong with him, and (2) it probably therefore was a "good thing" that he was no longer with us. A pm report came back to say that he was perfectly healthy. Did it make it any sadder that we had lost him? Not to us, but clearly to many people we knew this was relevant. And with his brother I remember praying for him to live and saying I couldn't have cared less what might be wrong - if he could only live we could cope with anything. Any doubts or worries I might have had before had gone - real life took over.

Please understand that for many people on this thread they have been through similar or worse experiences of seeing their children hurt or rejected and its not surprising that they are hurt on their behalf.

That's all, hope you are feeling OK and do please continue to post.

Libra, but they are saying that disabled babies are unloveable, because they are saying if they had a baby with a disability they would not be able to love them. If that baby's parents cannot love them, who can?

92% of pregnancies where downs is detected are terminated. that means that only 8% of parents who find out they're expecting a baby with downs feel that that baby's life is worthwhile. That says a lot about society's attitude to disability IMO. .

I worried so much in my first pregnancy that something would go wrong. I was 16 and thought i would be punished for being pregnant at such a young age and thought that something would be wrong with my baby, I cried myself to sleep most evenings. I had prepared myself that my child would be born with an abnormality and that i wouldn't cope be able to cope. Of course this was all in my head and i was making myself sick with worry. At my scan it was confirmed that my baby had a swollen kidney and possibly a blockage. When my ds ws born weighing 9lbs and whipped away to be checked over I blamed myself. I blamed myself for worrying too much, i gathered that i shouldn't have been worrying at all but concentrating on my pregnancy. When ds was diagnosed with renal pelvis dilation, I was so releived that it wasn't anything major but it also had me thinking that no matter what my baby had i would have loved him just the same.

Wannabe - no they are really not saying disabled babies are unloveable. They have been quite clear that THEY are not sure if THEY can love a disabled child. They haven't even said they wouldn't be able to love them they have just admitted they don't know if they will and how they will cope. If anything they are admitting a personality defect within themselves.

If anything this thread has proved that children with disabilites are loveable because of the parents on here with childen with SN proclaiming how much they do love them and trying to explain this to the posters.

I worried so much whilst expecting ds1 - I was convinced he would be born with no arms/legs or head.

Imo every mother worries about the wellbeing of her unborn child. As a mother you just want the best for your baby and for them to have a life without any major difficulty/upset. This is of course for teh most part, out of your hands. You do what you can as a parent.

Sorry prove was maybe the wrong choice of word but I don't believe the OP or MPD have stated or believe that children with disabilites are unloveable which is what wannabe is accusing them of.

Hi Essie

I think it is perfectly normal to worry when you are pregnant about all sorts of things. Wishing you the best on your pregnancy anyway.

Essie - when I was pg I worried - constantly, beyond about 25 weeks - that my baby was bored and lonely while in the womb.
What planet was I on, you might ask - and the answer is 'planet worry'.

Actually, a very small minority of parents do seem to be unable to take on parentiing a disabled child, as mentioned by Wannabe - Julia Holland, for e.g - and it also seems true that many people ho do NOT have disabled children think 'oh, i wouldn't be able to cope and that will affect my ability tolove', but the many many discussions I see on the SN board confirm that people find that they can actually cope (and how empowering to discover that you can actually do something you had doubts about), that even at times they feel they can't cope or would rather not have to cope, they love their children unconditionally and that the coping or otherwise does not affect that, and never would have done.

Mothers driven mad by lack of sleep, shrieking 'shut up' still actually love their babies unconditionally. The frazzled mother of 3 gritting her teeth to remain patient with her toddler still loves her unconditionally.

Anyway - there is very little you can do about any of this - it's part of the great lottery we enter when we decide to have a child. But worry we must, So, worry about something else which is totally pointless to worry about....like whether your baby is bored or lonely in your womb!

Thank you Libra. I have not stated anywhere that I beleive children with diasbilities are unloveable.

I was stating that I do not know if I could cope if I had a child who required 24/7 care i.e. severly disabled. By severely disabled I mean a brain damaged child, with no chace of indenpendant living. I worry about the strain that would put on my realtionship as we struggled to cope and also adjust to the involement of outside agencies in our life. I don't know if I could adjust to being a full time carer that I feel I may resent being that child's carer for the rest of my life.

It would repersent a fundamental change in my life (I know having a baby does that anyhow). I am not some cold hearted person that expects everything in life to be perfect. But I am honest with myself (and probably quite selfish).

Wannabe - As in far that anyone has a right to have a child, I have as much "right" as the next person. For the record I wouldn't have been part of that 92% that choose to teremiante if my child had been diagnosed with Down's.

"If anything this thread has proved that children with disabilites are loveable because of the parents on here with childen with SN proclaiming how much they do love them and trying to explain this to the posters. "

prove.....ffs

Have just re-read the OP. I can really understand those whose children have SN of whatever kind objecting to somone saying that people with disabilities are less loveable/less worthy of love. But the OP didn't say that. She said she was worried she might not be able to love the baby if something was 'wrong'. To be fair to her, I can see that there is a big difference.

hard work but very loveable and rewarding
i am expecting my baby in july and he will be classified i should imagine as disabled me i dont like the word
i see the child not the disability
i will have to work a bit harder try a bit harder i know i will love him to my utmost
i have known pretty much all along
he was concieved and he will be given a chance,
if anything i feel guilty cos i had a choice to terminate and i wouldnt do it
hes my son end of story
i have about 7 weeks till i meet him il admit im a bit scared but very excited at seeing him cuddling him for the first time

but as for the hard work when have you never had to put in the effort with your child i8ts what its all about
teaching them to learn to walk talk
im just going to have to teach samuel just that little bit more harder
i was given the choice when i was 22 weeks to terminate
but to me i made my choice when i decided to have a baby
i coudnt just go oops imperfection lets try for a different one
sorry if i have offended anyone here thats made the choice
thats was just my view we are all different and have different coping strategies different family backgrounds other things to consider

this thread is just proof positive that the parent of a child with a disability trying to talk to a person who has not had that experience may as well be talking a different language. It is one of those life experiences that alters your whole belief system.
Tis a bit like those of us who can remember our ideas of what being a parent would be like before we became a parent. Love those threads " I shall teacher him/her to play the piane, steam lima beans for luuncheveryday and learn Italian in my spare time " .

I can completely understand parents being petrified of having a child with special needs. I think few of us approach giving birth to average annie with total confidence let alone contemplating the effects of having a child who has a condition you may not even have heard of.
I think most of the comments are fear based. And I actually think parents fear having a child whose love seems from the outside to be attached to such suffering. The SN board is a testament to how beloved most of our SN children are but a diagnosis is always a shock and we fear for our children. Perhaps we defend ourselves by anticipating being sheided from such a firece love. To love a severely disabled child seems from the outside to be such an agony. Those of us who do it know its joys but I think the world outside defends itself - almost wishing that they will not have this terrible, beautiful connection to a human being so frail and dependent. When you agonise that your child will do well at school and make friends how do you even imagine the agony of waiting for an older child to be able to talk or stand. Its self preservation I think.

But I wish those who try to honestly ponder these things would think before they articulate even understandable fears. Had the OP said " I worry my child will be gay, I don't think I could love a gay child" I am not really sure that the responses would be so mixed.
Talk about fear of coping by all means. But please try to recognise that the step to " i am not sure I could love a child with a disability" is just heartbreaking for those of us with children with disability to hear.And it does continuate the notion that having a child with a disability has a get out claus - we are entitled only to a healthy perfect child. It may not be anyones intention but that is the posion it perpetuates.
I am not blaming any one for honestly expressed fears. i am asking you to read how your comments affect us and reconsider for the future.

Well said pagwatch.

I also feel very frustrated when there is a huge panic about tests for Downs Syndrome and what are they going to do, because it really comes across that they wouldn't want a child with DS but they never actually come out and say that honestly.

a most excellent post, pagwatch. very articulate.

'because it really comes across that they wouldn't want a child with DS but they never actually come out and say that honestly. '

And it implies that having Down's Syndrome is a fate worse than death, that in fact, death is preferable.

Well, I've met a whole lot of asswipe, shitehole excuses for people in my life, but none of them has Down's Syndrome.

Funny that.

Thanks to all those who are supporting my original post!

I did not say any child is unloveable, SN or not. I also did not say that I would not be able to love a child with SN. I don't secretly believe it either. What I did say was that I'm afraid. I'm afraid of totally failing, as a mother and as a woman. I am terrified that I will be unnatural and a freak. Thank goodness, enough people here have reassured me that (a) it's normal to be scared, and (b) chances are I won't be a freak/not love my child/a failure as a parent. Thank you all.

As for being unprepared (and the implication that I should have thought more carefully about having children) - should I perhaps buy a pram, and then also a wheelchair just in case, and hire a special nurse, and quit my job etc etc? There's only so much preparing one can do. Which is exactly what is so scary.

I think the OP has deviated about me panicking and being scared about the major changes happening, with all the potential things that could go wrong, to being a post about prejudice against the disabled. And I wish I had just gone to bed miserable instead of posting!

TBH I think all this pressure on yourself is not going to help once the baby is born and it might bring on PND, imo.

Good luck.

How patronising NotABanana -
I think all this pressure on yourself is not going to help once the baby is born and it might bring on PND
What are you a doctor?