Giving up v.severely disabled baby for adoption?

[mirage999]

Contraversial question I know - but is it possible or easy (practically, not emotionally) to give up a severly disabled baby (one that requires full time special care) at birth for adoption or have it placed in care?

I am trying to decide whether to go for the prenatal tests for Downs etc and have decided that if the results show there is a problem with the baby, I would rather let nature take its course and allow the baby to live (but be looked after by someone else) rather than go ahead and have its life terminated, thinking that this would be the lesser of 2 evils.
Has anyone done this and is it possible to have a such a baby adopted/placed into care?
I have 2 healthy children already and the reason for not wanting to keep a baby who was severely disabled as it I dont believe it would be fair on them. Plus my DH would not be supportive and I have no family who could help.
thanks in advance

Both my parents are disabled I have been bought up around disability and the stigma that it attracts. I was bullied at school because of it and have been in trouble many times defending my parents (even though they constantly told me to rise above it).... Should they have put me and my brother and sister in care at birth because of their disability and its effect it had us??

I would not terminate or give up any child for reasons of disability. I did however have the neucal (sp?) scan but it was mainly a chance to see my baby.... My feelings for the baby would of been the same regardless of the results.

I do know that unless you have had experiance of living with a disability or with someone with a disability then the thought of it can be terrifying but surely you get over that and love your child as you would any other. I love my parents and dont see their disabilities so if I were to have a child that was disabled then I feel that I too would not see their disability only my child.....

So you can get all your grieving done before LO arrives? Sorry, I don't agree. Besides it's a personal choice.

Yes - Riven DOES talk a lot of sense (as always). I have just had to help with bedtime and was thinking about a few of the things she said (before i even read them) A "negative" result, could well poison the pregnancy and that is not good for the baby. I think that irresponsible was a poor choice of words too, but i do think that if a test is non-invasive and available, i would have it done. I agree with you too Riven that disability does not mean that a child has no right to life, of course i totally abhor the very idea, and again, it is almost like eugenics. But surely you must be in agreement that there are certain conditions that would mean a baby is born to be in pain and suffer and live a very short and painful life - surely the kindest thing to do under those circumstances is to prevent that? Rather than life at ANY cost?

A friend of mine's sister has a child who has Downs syndrome. The mum had the Nuchal Scan which gave a high probability of Downs. She decided against amnio because of the risk to the baby. She loved her baby already and wouldnt have dreamed of terminating. She was however, able to come to terms with the fact that there were going to be problems. I did say to my friend at the time, why isnt she having the amnio done as i would want to know one way or the other if possible, but my friend said her sister was very accepting and just made sure she was clued up about everything. She took it that he would have DS, and prepared herself. He has had to have a few ops on his heart alread - i think he is four now. Her Sister said to me that she was never really that bothered about the Downs, more the worry of course about the childs welfare etc. Apparently he is great and im pretty sure his family wouldnt have him any other way (i don't mean that to sound patronising, but i am trying to say badly that X would not be X without his Downs and that is who he is so why would they swap that?).

I suppose everyone is different, if i were carrying a child with a disability, i would want to know, not so i could terminate, but so i was prepared. I would however terminate a pregnancy if i was told that the child would suffer.

Nancy - maybe i shouldnt have said that, but i have read that apparently there is a sort of grieving period when a disability is discovered, its a documented thing. I do agree though it is a very personal choice.

I don't believe in life for life's sake, and as such, im pro-euthanasia. I can't bear to think of anyone suffering, be that a child, an old person or a dog.

But you would also see other children, and look at them and your child, and think, my child should be doing what they are doing.

I don't want my children to be the best, the smartest, the richest, the most famous, I want them to grow up, do normal things, reach their own goals and dreams, be happy. For me, the hardest parts of having a child with a disability are the simple things, like watching a child of a similar age to DS2 walking down the street, holding his mother's hand, eating an icecream, knowing he'll (probably) never do that....

I think both Riven and Lucyellensmummy have valid points.

But my question is, who can you trust?
when I was 20 weeks at the scan it was picked up that my ds had transposition of the aortic valves (his heart is back to front) we were told by specialist to consider termination. I am now watching my 2 year old bounding around, saying heyup cocker (his fav saying at the mo). Yes he has to have checkups but he is perfectly fine (for now anyway).

Sorry also forgot to say, Lucyellen, I spent months thinking would he survive, would he not, months of pure heartache, we prepared, like you said, he was to be rushed to Alder Hey and have a corrected heart op. But when he was born, he had found a way of fixing himself (very rare I know). But I have to be honest I certainly didnt enjoy my pregnancy.

When you are pregnant with no experience of disability you imagine that when you have a child with a disability, the disability will scream out at you. Actually when you have a child with a disability, the disability comes second and you love them just as much as your non-disabled child. If you could give your non-disabled children up for adoption when they become a bit difficult then yes worry about it, if you couldn't then I wouldn't think about it.

I personally would have refused all invasive tests for DS as ds1 has a condition that is far more disabling that DS (although people struggle to understand that as ds1 looks 'normal') - his siblings were high risk for that condition (no test available wouldn't have had it anway), so no point terminating a child for DS, if a future sibling went onto have Ds1's condition anyway.

People's perspectives on disability vary. And having met someone with DS taking as many GCSE's as I took O levels (and I went to Oxford) I wouldn't count DS as automatically being a severe condition anyway.

Nancysgarden - your earlier post suggests there are topics you think shouldnt be discussed on MN yet you've read and posted again?

LEM I have read about the grieving process but I believe for some people it can take years. DP and I have worked extensively with adults with multiple and profound needs and both have close family members on the autistic spectrum. Our own DC is normally developing but as I say we decided we would keep baby whatever hence no need for tests. Obvious;ly they are designed for other things than deciding on a termination, but we felt we didn't want them. I would respect an individual's choice.

I also don't believe in suffering for suffering's sake but I also know there is a growing community of adults living with conditions such as Down's who would like to fight for their right to exist.

I agree with Riven about the testing. And, LEM, the medical profession can't possibly know for sure that a child will suffer - just as perfectly 'normal' babies have been terminated due to these tests, and mothers have given birth to healthy babies in spite of dire warnings to the contrary.

In relation to the Q the OP asked, does anyone know what the stats are for children given up for adoption/placed in care who have been born with a severe disability?

Not sure heated, but children who are severely disabled are very difficult to adopt. I think many more will be in foster care.

In answer to heated, i am not aware that these statistics are kept. Children come into care at different ages and for different reasons. What would be a " severe disability"? I understand that some consultants will perform terminations for things like cleft palate, which most people would not see as a "severe disabilty".

Some of the children who are placed for adoption are not born with their disabilities and many will develop a lot more problems which are special needs from being in the care system. Most children adopted in the Uk now have SN of one sort or another

My sister had a mosiac of Edwards. She lived until she was 5 years old. I was 18 months older.

My mother says that if offered, she would have taken genetic testing. Not because she would have aborted, but because she would have liked to have had the information.

But if the OP suggested she was going to abort, she probably would have been asked to consider adoption. So, she is considering it.

I don't think the considering adoption for a child that that one knows will be special needs is wrong.

What I do think is wrong is taking heroin, drinking to excess and adversely affecting the baby during pregnancy.

Admitting that you think adoption may be the best thing for your baby can be a kind act.

katch, you do make an excellent point there. I've actually given myself a headache over this thread. Reading peoples responses has thrown up things that i should have considered before posting. I'm not sure what is the right thing to do to be honest. I, thank God, have never faced this dilemma and seeing as i don't intend to have anymore children i wont have to - i don;t think i really understand, as it is one of those things unless you have been there it is almost impossible. I agree with my own argument, but i also agree with the counter arguments put forward - hence the headache!

In reply to LEM's comment on testing-I refused all tests bar sdcans during rpegnancy with ds4. I had scans as if he needed heart care etc that can sometimes be done antenatally and as it was a home birth I would have wanted to be near a NICU.

I don't feel I was irresponsiblre at all.

I already have 2 disabled children, both on the autistic spectrum, plus an NT one. So I knew / know (as ds4 is still a baby) that any child I ahve has a high chance of non detectable disability. Testing would have told me very little about whether he was disabled- it might have ruled in or out a few disorders, nothing more. Crucially, if I had been expecting a child with a not compatible with life condition i'd still have wanted to birth and hold him at home so that wasn't a factor.

With ds3 I had all the blood tests (pre ds1's dx) and they showed him to be high risk downs, the rationale was so we could prepare ourselves. We were placed under intense pressure for an amnio which we didnt want,, so much so we buckled and went for the test but ran away whilst waiting for the comnsultant after seeing the Counsellor.

Ironically ds3 was born NT and free from downs and then regressed as a toddler and lost all speech; he is now verbal again but very severely delayed, probably always will be.

As someone who could never terminate anyway there was no value for me in having tested, just a lot of additional worry. In addition by the time I got to DS4 I genuinely felt it would send completelyth wrong message to my boys about their value as poeple. They re who they, and loved, the disability does not change that.

Some people need the tests and I can see that but the were really not for me and could have saved me worrying pregnancy.

And I forgot to say - a friend of my mother has a daughter who she only found out had spina bifida when her younger DD was studying medicine, by which time the girl was well in to adulthood (and motherhood).
I'm sure the doctors knew at the time, but for whatever reason it wasn't deemed necessary to tell her.
The only 'evidence' is a mole at the base of her spine and pigeon toes.
These days, that mother would be pressured to terminate, and may have done so 'for the sake of the siblings' or because she felt she 'couldn't cope'.

Also where do you draw the line? What does the op class as severley disabled.

Apparently there is rumour of a test for Autism antenately, not sure how true this is. But that really does scare me.

If the op doent think they cope, how would they cope with the a child on the spectrum.

we were asked to gene bank for a test for asd, we said no.

asd tests would be crap and unless research has moved manifold (may have) could only tell us minor info- like if on spectrum ( kids on spectrum differ so much, wher do you draw the ine? besdies- ds1, ASD / HFA far far harder work than ds3, asd) and also there's the whole trigger thing- isf someone has the gene it may or may not be triggered.

I wouldn't touch or contribute to research with the bargiest of barge poles

And isn't having babies all about love? You love the child you've created before you see it (that's why it's so offensive when people say a miscarriage is for the best, as at least you didn't have a disabled child).
Likewise with siblings - who can say that a child is not a better person for loving a sibling less able than themseves?
And doesn't it diminish them and the love they are capable of by assuming they will only suffer from having such a sibling?

I will try and do a link, not very good though

news.bbc.co.uk/nol/ukfs_news/hi/newsid_7730000/newsid_7736100/7736196.stm

I truly believe you get what you are lucky enough to be given, when we decided to have DC we wanted them no matter what sex they are and whether they would have any special needs or not.

As has been pointed out on here what if your child has an accident after birth, what then?

Well the testosterone idea intrigued me (because i've read theories of it being related to hyperemesis which I also ahd) but what theya re looking at is a gene or at best a tendency towards i think- asd is far more complex than that. Why is ds1 so much more difficult than ds3 despite a 'lesser' dx? What triggered ds3 at 3 years but was evident in ds1 at birth? Are there factors in how we raised ds2 that prevented him from developing asd? until the exact contribution of environmental factors is understood then I wouldn't give a penny for the test.