A question about Down's syndrome [WARNING - Could be upsetting]

[JaneFonda]

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.

KalSkirata am not an expert except on my 4 (1 sadly died) DS son 30 not the brightest, little speech deaf but is so kind and thoughtful it makes me want to weep, 2 girls 27 & 23 quite academic but sometimes haven't the sense they were born with, both have voluntary jobs. Son not able to work due to epilepsy but is brill at housework. TBH I think their quality of life is so much better than little brother 13 CP deafblind and sister 6 with rare syndrome.
Best wishes

The children I work with who have DS nearly all go to mainstream primary. A lot go to secondary but may transfer after a few years to SN S.

But I also see the other end of the DS spectrum with PMLD plus ASD and all kinds of health problems.

The tests cant tell you where your child will be on the spectrum.

I think there is a particular stigma attached to DS because it is a visable LD and most of us grew up knowing the older child with DS who lived with elderly parents etc.

It is also detectable but not curable so the implication for dectecting in the first place is so that you can terminate.

We live in a society firmly intrenched in the Medical Model. So if it cannot be fixed it must be removed.

There are so many, many conditions that cannot be detected prebirth and are 'worse' than DS (my inverted commas because I am stuck for finding a better word). Yet the focus seems to be so much on DS. When i was pg with DCs 4&5 it was like this stuff was being forced on me and shouting at me from all the information in ante natal clinic.

If I was a person with DS I would feel that I was deemed unworthy of life. What must it be like to see that stuff?

I swerved it all by not having any prenatal testing. That could be seen as a cop out I suppose. I didnt want to have to make the decision.

devient a few years ago my experience of DS was with placid, friendly children. I now know that there is far more to DS than that image. It is perhaps ironic that there is such a push to terminate prebirth but once a child is born there is the sterotypical image of the happy, loving and agreeable child with DS.

I think there is a general need for much more education about disability. Our society is pretty rubbish at that sort of thing. Drs get little or none as part of their training. I used to do talks to midwives and I think I was pretty much all they got

For me, the choice isn't about the quality of life the child would have (or not have), but the deterioration of my and my family's quality of life. Obviously if something were to happen to one of my DDs or DH, we would deal with it. But I wouldn't bring a child who would need constant care into the world if I had a choice to avoid it because of how it would affect those of us already here.

My dsis had ds and is in her thirties. She is in great sheltered accommodation and does loads of activities - all funded by the state. My elderly parents supervise her care and have her stay for christmas and the odd weekend. When they can't do this I will take over -an extra responsibility for me but not a life changing one.

This funded support is the norm for adults with severe learning disabilities. Yes I worry about the cuts but so far local authorities have a legal obligation to provide this support.

I wondered what I'd do if my dc tested positive in pregnancy but never had to make the choice. But by 3 it became obvious my son had sn. 3 years on nobody knows why and it is likely that he will never be independent.

2old2tobeamum: in answer to your earlier question I do think there is a significant difference between terminating a foetus and killing a child/adult. I appreciate not everyone sees it that way, but to me it's a different question so if my DD had an infection/accident/illness and became severely disabled this would be a different decision than if I knew I was carrying a foetus with a similar disability.

sometimes it effects siblings in a positive way Annie. Mine learnt to be more independant. They now know that disabled people are people and to speak and treat them the same. You'd be astounded at how many friends kids treat dd like some sort of dress up doll or mascot. And not a real person.
Kids are resilient. I just asked ds1 and he said he is glad she was born. he does wish she could walk and talk (she is far more disabled than the average person with DS) but on the whole he says he has learned stuff he wouldnt have.

Sorry Booboostoo I was a midwife and I felt a fetus was the stage before baby just as a baby was a stage before a toddler. We had a fetus/baby born @24 weeks he died 13years having had a very full life albeit different. I know are views are different but think we both care as all do on this thread. I feel I must be honest we do not come from the same angle as most parents as we have adopted 8 with special needs age 30 to 6. I hope my views would be the same if they were my birth children but who knows?
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I apologise as i have not read the entire thread but...

I went through the same anxieties when i was carrying DS. My test results came back low risk and he was born without DS.

Whilst i was waiting for my results coming back i was in bits, I felt that i couldnt give the lifelong commitment and care as has been said before. And i felt like shit. My BIL works with children with special needs and i knew he wouldnt ever forgive us for terminating a child with DS, but that is what we were going to do if it came to it. We knew we were being selfish but we had to be honest with ourselves. I know that if DS had been born with downs without prior knowledge then we would have given him the same love anyway, that wasnt the point.

Whilst i was waiting for my results i was chatting to DH's family friend. She is in her 60s and has one child with DS and one child with special needs (i am not sure what it is as i dont know her daughter) Her son with DS is 40 and is adorable. I was chatting to him then went on to chat to his mum. She quietly said to me that she loves her DS with all her heart, but (in her words) 'You are lucky, you can find out nowadays' She then looked me in the eye and said 'I didnt get that option'. (of course her son was out of the room when she said this)

Please dont judge her, she is a loving mum and adores her two DCs. I think she was subliminally saying to me not to worry about any choices i make - FWIW i didnt tell her i was waiting for the results, but she is a medical professional and knew what stage of PG i was.

I will never forget that conversation, i never judged her.

I have also never shared this story with anyone (other than DH)

I wish your friend all the best with her pregnancy

I often wish dd wasnt disabled but Id rather she was and here than not here.

Well said KalSkirta, wonder in future Dementia etc could be diagnosed prenatally how many of us would be here? Sorry to be flippant.

look at your envelope 2old!
Gawd can you imagine testing that would pick up who got cancer (1 in3) but not when.
Could be 3 (dd is at a party today with a 3 yo who has cancer and isnt expected to live). 13, like my friends lad, 23, 37, 68.....
I think testing is a double edged sword.
dd is life limited. Every single second has been and is precious despite the stress, lack of sleep etc. If we woulnd time back Id do it all again.

2old2be I wonder if I would feel any differently if my DS2 was my birth child. A lot of birth parents seem to feel huge amounts of guilt regarding their DC's disablities. As adoptive parents we dont have that.
I do have some guilt because I always feel i could be doing more to help him but I dont have that 'was it something I did' that birth parents beat themselves up with.
I wonder if that makes things a little easier for us?

DD was absolutely perfect and was rarely ill. she was a golden child. Then she got sick and became very disabled when she was 12. No warning, no tests, it just happened like a bolt out of the blue.

What would I have done if they did a prenatal test for childhood luekmia? Balance out the earth shattering heartbreak of watching her suffer and then die against the 12 wonderful years I had her for?

This testing stuff just seems to bring dilemmas and few solutions.

I do hate it when people use existing children as an excuse.
please don't lay the blame at their door.
my ds adores his severely disabled sister, yes he has missed out on stuff like holidays abroad and silly stuff.
but he has gained so much more.
don't under estimate your children

well said seven

MrsDeVere I agree this testing stuff does not enhance our lives as KaliSkirata says cherish every moment.
I know you would feel no different if DS2 was your birth child and I am so sorry about your golden child. 3 of our adopted DC's have died J & A had short life expectancy but S didn't I still feel so guilty I am still devastated. Never spoken about this before but life goes on and I have others to care for and I love them all so much the same as my homegrown.All of you take care and keep fighting.

I am so sorry for your losses.
Its just the worst thing ever.

Such an interesting thread, have enjoyed reading everyone's opinions.

OP hope your friend has plenty of support at present.

When our ds1 (dc1) was born at 35 weeks and the medical team broke the news that they thought he had downs syndrome I was devastated. I think it was because of all of my preconceived ideas of DS. Young adults in bad anoraks with bad haircuts following elderly parents around the supermarket! Forgive me I was only 26!
I describe the problems that people with DS can have to others is that children/adults with DS have exactly the same medical problems as the rest of the population, but they are more likely to have these problems, ie heart defect, glue ear, cataracts, dementia etc etc. And yes they do have differing levels of Learning difficulty/special needs.

Ds1 did indeed have DS, we have gone on to have 3 more dc (4 was always my 'number'). We decided to skip the scan screening and had cvs's for the subsequent babies. I just needed to know. Can honestly say I don't know what decision we would have made if the results hadn't come back as 'genetically normal'. It has been tough and I'm sure there is more to come (ds1 is now 8) proud mummy- look at my photos if you want a nosy!!!

He is simply ace and can't imagine our family without him.

If she was my friend I would just listen to her worries and if you think it may help point her in the direction of mn, as you have seen on this thread she will get balanced, sensible and nonjudgemental support esp on antenatal choices board.

four4me what a lovely 'photo gallery yes most DS are great can't do that page...too old1

We have several disabled children in our family, and I always said I would never have any tests. I've finished with pregnancies now, but my view of Downs as being a minor disability has radically changed watching my niece grow up. She is quite healthy but very very seriously disabled (at 16 she has a developmental age of about 18 months). She is very very loved, but it has had a profound effect on her immediate family and I think that I would find it very difficult if I were placed in a position where I had to choose myself. Of course having children is a big risk regardless, and things like accessing appropriate support and education can be much harder with a less profoundly disabled child (even more tricky for adults).

If the right levels of support (education, therapy, respite care, finance for adaptations, opportunities for recreation and hobbies, supported housing and jobs for disabled adults, enforced anti-discrimination law and widespread education being just a few of thing I think are in short supply) were easily available then things might be very different of course, but life for parents/carers of disabled children and adults is not I think in any way shape or form easy. I am certainly aware that my life parenting my children is by many measures easier than my sister's life parenting her children. Please don't get me wrong my nephew and niece are lovely, but it would be foolish to pretend that the complications of their disabilities are at times very very challenging.

but nooka as long as people see disabled as being second best that won't change.
having a disabled child is not the end of the world.

'If the right levels of support (education, therapy, respite care, finance for adaptations, opportunities for recreation and hobbies, supported housing and jobs for disabled adults, enforced anti-discrimination law and widespread education being just a few of thing I think are in short supply) were easily available then things might be very different of course, but life for parents/carers of disabled children and adults is not I think in any way shape or form easy.'

And until those who are unaffected and think it wont happen to them campaign alongside disabled people and carers the provision will remain poor. But sadly I see little of this.

Who is going to change their minds? They have no idea they wouldn't last 5 minutes in our shoes. I find people think the disabled embarrassing or cute don't know which is worse

Termination is usually only considered if the abnormalities are too great for the child to make it past a couple of years of life.

Many suffers have mild conditions and few live to any great age but tend to get by OK with not too intensive care.

Then you have the life long dependent suffers who can be a handful both physically and mentally but social help and respite care tends to make it a bit lighter for the parents.

Children with large heart defects and severe abnormalities are usually the ones considered by the medics for termination. The reason being only a few percent make it past a couple of years of life and suffer greatly for it in life support.

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

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.