A question about Down's syndrome [WARNING - Could be upsetting](154 Posts)
I have a question because I genuinely don't know the answer. I would never look to offend or upset anyone, and this is definitely not coming from a judging angle.
One of my best friends is currently awaiting results for tests to see if her baby has an increased chance of having Down's syndrome.
I was talking to her about it, and she'd been reading about possible options, eg. termination.
I am genuinely unsure - why do some people choose to terminate a fetus if it has Down's syndrome? Absolutely not judging anyone's decision, it is none of my business, but I suppose I'm wondering what the dangers are if a baby is born with Down's syndrome?
I have only met two people with Down's syndrome, and they have seemed, well, perfectly healthy. I understand about the mental aspect of it, but physically - are there problems?
I would really appreciate any answers you can provide, it's a scary time for my friend and I'd like to be able to support her without seeming totally ignorant.
Shocked that people found midwives unsupportive of declining certain screening.
Declined triple test in my 1st pregnancy and then this time nuchal fold was available, which I also declined. My mw was totally supportive of this.
I am totally pro-choice when it comes to screening and to decisions following results and am sad that there are mws who might not be. It is a very individual decision for so many reasons and surely HCPs should only be supporting this decision making process, not judging it.
"until those who are unaffected and think it wont happen to them campaign alongside disabled people and carers the provision will remain poor" - this! We are all only an accident or an illness away from disability and would be a much better society if we remembered that.
how does anyone know for sure that a baby will only live for a couple of years, and even so isn't taht better than nothing
Not if it can only be achieved with a huge amount of painful & probably quite distressing (& dangerous) medical intervention. If you're thinking that the only way your child will have any life is with lots of suffering, then no way. I couldn't easily face that.
My family experience of Downs Syndrome is like yours, Nooka.
I was told dd would live days or weeks. Doctors get it wrong all he time. And it doesn't sound like Nooka's neice is suffering. Lots of kids have operations, or a series of operations. Children are pretty resilient.
People might look at the 8 hour op dd is facing shorlty and say she is suffering. She isnt. I can hear her yelling with laughter in the other room.
KalSkirata oh yes that word...sufferer/suffer.
tooold2be -The world needs more people like you!
Thankyou vixsatis round here there are quite a lot of us all old and decrepid but really care---off to do medicines.
I don't think termination is a decision any woman takes lightly, I would try to support a friend who chose to terminate, or a friend who chose to carry the pregnancy through.
I chose not to have tests done when I was pregnant, thinking I would never terminate anyway, even if the tests were positive., andthat would be morally wrong. I was so ignorant and nieve.
Now I've known so many more children and adults with DS or similar conditions, all I could do with a friend trying to make the decision would be thank God it wasn't me. It's an impossible choice, you are likely to spend the rest of your life wondering if you have chosed wrongly, either way.
most of the reasons I have seen given revolve around the person with ds being a burden on the family, existing siblings. There are some health issues that can be serious and part of having down syndrome BUT that can exist where there is no diagnosis of Down Syndrome. People think they are unable to parent a child with ds. I think people remember the stereotypes of their childhood and the scary worst case scenarios. Statistics show that parents who have an awareness of and correct information surrounding down syndrome are more likely to continue with the pregnancy.
FWIW - I am the mother of a child born with down syndrome and a heart defect. After surgery her heart is like a 'normal' one. Except for a recent bout of pneumonia - again lots of kids without ds in the hospital with that one - she is an incredibly well child. Her heart defect is the most common found in children with ds and it is easily repaired despite being very very serious iyswim.
As to siblings - as I type this she is sitting at the table with her two younger sisters and they are all being silly - the worst - not the child with down syndrome.
She attends a mix of mainstream and special school, she is able to attend before and after school care as I have returned to full time work - I did it when she was one and then again when her siblings started school.
Sure there have been times when it has been hard work but tbh her sisters are harder work than she is and they are not sn. I do not look at her with blinkers on and I am in no way a saint! I am simply her mum.
my uncle has ds as does my cousin's son. apparently there's no reason why they both have.
based on my uncle, I always thought I would terminate a pregnancy if the child had ds. my uncle was very very violent as a younger man and stole frequently. he was one of the care in the community experiments in the 80's and has lived in squalor since. he has been mugged and stolen from many many times. he refuses any offers of support - even warden-housing - he is now in his 60's.
my cousin's son was born when I was 15. his dad said (when cs was maybe 2 or 3) that every morning he woke and felt a weight settling on him. they grieve for the child they thought they would have (they'd been trying for ten years) and, even though they love their son, knowing he will aways need residential care (he is 19, profoundly deaf with maturity of a 7 or 8 year old, frequent severe chest and gi problems) hurts them. his elder sister intends to take over his care when their parents are no longer capable and, of course, we all help too but still.
anyway, because of my family history and despite being 22, I was supposed to have an ac but had a huge panic attack. I was scared of the 1 in a 100 chance and that told that, no matter how certain i was I didn't want a child with ds, I wasn't capable of an abortion. my son was fine.
I volunteered at a special needs school. There was this amazing little boy with downs, and leukaemia. However he was happy because he was loved. The school environment was incredible, as was I presume his home life. Was his life normal? (Whatever that means anyway) probably not. Was his life significant? Absolutely without question. Both he, the other children and the staff at that school taught me a great deal about life and what is truly important. It was a privilege being there.
because people usually hope their children will grow up to have fully functional independent and reasonably normal lives. They dont want to go into parenthood knowing that there is a good chance the child will have health problems, learning disabilities and will never be able to leave home or be without a carer.
I would terminate for downs
I think Down's syndrome is fine when they are children. They can be a lot of fun. And whenever there is this kind of debate on tv they always brig out the cute Down's syndrome child. But they are often at the higher end of the iq spectrum.
But they gloss over the fact that day is usually a life sentence for the parents. They live well into there sixties and very few are fully independant. these children are never going to fly the nest. If they do they need a lot of care in he community etc. I have seen so many tired looking 70/80 year olds bringing in their Middle Aged ds children for hospital appointments. It can often be a traumatic affair. They are supposed to be in their twighlight years enjoying a well earned rest and I feel for them.
Here is no wriht of wrong. Just need to understand the full long term implications of having a day child and what it entails x
I wouldn't accept a test for DS - I don't judge other people but for my own personal and religious reasons. I know the health implications, I have done a lot of research (Post Grad), know a lot of families and I absolutely feel that no two children are the same. I think attitudes have improved thankfully. Friends of mine say the stigma and pass remarkable comments from 'well meaning' friends are the hardest thing to deal with. I have found that it is harder for older parents - they worry about the future and on a practical level, when siblings leave home - having company for their child who has DS (rural area).
Some of the best people I have ever met, who have made a huge impact on me happen to have DS.
The test isn't just for Down's, if I remember correctly. It also screens for other truely terrible genetic disorders.
I never thought I would terminate a pregnancy, for medical reasons or otherwise, and didn't have the screening for DS with my first baby. At my 20 week scan a heart defect was picked up (AVSD and some partial blockage) and I was informed it is often linked with DS.
Just the thought of my baby needing open heart surgery alone, and whether she would even make it to term or be strong enough for the surgery, was a lot to take in and imagine putting a tiny baby through. To then find out that my baby had DS and this could impact on her prospects in terms of health alone was, in my eyes, putting my baby through something I wouldn't want for myself or anyone else who I loved.
The sad thing is that people talk about how loved living children with DS are like people like me don't love our babies that we chose a different path for. My baby isn't a shameful secret. I tell everyone about her. Her photos are in my house on display. She's just not here in my arms and that decision was made purely from compassion and love for her.
Unfortunately, I am also all too aware of the constant cuts to services for adults with health needs (I'm a student social worker on a integrated health care team). I see families at breaking point who are struggling to support their relatives with their health needs, whether DS or any other condition. That is no quality of life for anyone.
You can't guarantee what kind of hand you will be dealt in any pregnancy, whether seemingly healthy or not, but if you have enough information to know the odds are not in your child's favour then I see nothing wrong in showing them compassion and letting go of them. I love my baby with all my heart and I would have loved her if I had never known about the DS or heart defect before giving birth to her. What other people choose to do in my situation is none of my business and I know they would also be making their decision out of love for their baby. I wish people with disabled children/relatives would not assume I didn't love mine!
I have a friend and a cousin who both have little boys that have DS. Neither of them knew until their babies were born that they had DS as they were low risk when screened and no DS indicators were picked out at scans. I know they adore their delightful children, but I have no idea whether they would have continued with their pregnancy if they had known their babies would have DS.
I think some people feel unable to provide everything that a child with potentially severe special needs might need and think it would be fairer to terminate. Must be a hellish thing to go through.
I would terminate without a second thought. I've seen too many families who have dealt badly with the birth of a child with SN and they have allowed it to skew the family dynamic so that the marriage suffers and breaks up, the other children have to fit around their disabled sibling and are neglected and resentful, and the SN child is made into a little god and turns into a giant PITA. (And that's when the child is young - what about when they get older, the parents get older and frailer, the sibs have their own kids to look after?) I should know, I grew up in a family like this and I wouldn't wish it on my worst enemy. I know I couldn't cope with it. Some people could cope with it and good for them for going ahead, but abortion isn't the same as killing a person who is already here IMO. I realise that there are lots of things that can lead to disability and it's unfair that DS, which can be so varied in its effects, can be tested for and other things can't. Sorry to be so grim and huge kudos to those who have made their families work under these conditions, but I've lived (still am living) the dark side of this.
What a great thread to resurrect.
Kids with SN are people and not some kind of curse.
Fanjo You're right, I should have left this alone instead of making everyone feel shit before Christmas!! Something resonated and I had my say, yes of course they are people! (which means of course that there will be difficult ones as well as sweeties). Sorry if I sounded like a bitter old cow.
(Although we cant just terminate people because they will be difficult..mind you that's a whole new thread right there)
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You suspect it was for the best she died because she had DS?
I bloody hope views like that are in the minority.
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