Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
Ethical dilemmas

See all MNHQ comments on this thread

Original poster

Ignorant quetion, and not sure how to put this tactfully, but why do people not want to have a baby with DS?

385 replies

LesAnimaux · 10/04/2011 20:59

I don't want to offend, or be flamed, but I am curious.

I've seen several threads where posters have terminated a pregnancy when they have found out their baby has Down Syndrome, and then gone on to ttc a "normal" baby.

Now, I don't personally know any one with DS or any parents of children with DS, so I genuinely don't know the difficulties they face. Is life with downs syndrome really so bad? Or is it the thought of a child growing into an adult with SN and having no one to care for them when the parents are no longer capable?

Out of all the things I worried about when pregnant, downs syndrome wasn't one of them.

OP posts:
SpeedyGonzalez · 12/04/2011 00:08

Beaker - I was thinking the same. I know a lady whose son was beaten up at school and left brain damaged. Sad

WinterOfOurDiscountTents · 12/04/2011 00:13

whats with the hyperbolic extensions? What has acquired brain damage got to do with ante-natal testing? Do you have to turn a discussion into pointless rhetoric because you don't like some of the opinions on it?

Hmm
BeakerMeep · 12/04/2011 00:17

It's not pointless. Your child could have an encounter (physical, viral etc) that could lead to the very same issues that DS could.

What would you do then?

I'm sure the answer would be to care for them in the best possible way?

BeakerMeep · 12/04/2011 00:18

So why not continue with a PG because that same child is facing the same, but just before it has been born?

sungirltan · 12/04/2011 00:20

yes, but

yes, but

yes, but......................

fgs disabilty through misfortune and or aquired brain injury is just as likely to occur as not.

we take preventative steps against risks all the time. vaccinations are a good example. is it not worth vaccinating because there are so many other diseased which cannot be jabbed against?

sungirltan · 12/04/2011 00:22

why is it seen as so odd to plan for situations which are within our control?

CheerfulYank · 12/04/2011 00:24

That's not as relevant as the "your child could have a brain injury" point, IMO.

duckypoo · 12/04/2011 00:33

I don't know tbh, it's such a leap of faith having a a baby, you should be prepared for any eventuality. I read something awhile ago that featured a list of conditions "allowed" for in late terminations, it included cleft palate fgs, please do correct me if I am wrong, I may have been reading a dodgy source.

I have worked in an acute medical ward and cared for those with terrible difficulties caused by downs, mostly blue, requiring 1 to 1 care ect, still I could not terminate.

It's my view only and I am pro choice, but even if my baby had a fatal abnormality I would rather the child died naturally or I gave birth and at least got to hold them. I avoided the hassle by not having testing, apart from my first, there it was an opt out test and I was naive.

Ok I'm not going to pull punches, it's my view and I'm entitled to it, I think it's wrong to terminate babies because they have a disability/are less than perfect. I do agree that terminations are sometimes necessary, where having any baby would be a terrible thing.

But the whole weeding out of the less than perfect, meh.

If they could test for autism in the womb, I'm sure a lot of people would terminate. However I was watching a physics prog on bbc4 the other day which described a Man who made huge advances in theoretical physics. By the description of his early life he was glaringly autistic.

The world needs variation, not perfection.

expatinscotland · 12/04/2011 00:43

'Also I'm a selfish, impatient, intellectual snob who no ds child deserves as a mother'

Hmm

Charming.

CheerfulYank · 12/04/2011 00:48
edam · 12/04/2011 00:56

duckypoo, have you ever read any of the heartfelt posts by people who have actually faced the agonising decision about whether to terminate for conditions incompatible with life? Only your line that "even if my baby had a fatal abnormality I would rather the child died naturally or I gave birth and at least got to hold them" sounds rather glib when I recall what people who have actually been in that situation have said.

expatinscotland · 12/04/2011 00:57

My personal philosophy has always been that it is not my right to decide if someone else's life is worth living. It's their's same as it's my choice is my life is worth living, hence, why I support assisted suicide. Who am I to decide a person's life isn't worth living because they are disabled?

duckypoo · 12/04/2011 01:06

I have read them yes, I feel a lot of sympathy towards them, it's an agonising decision, I don't judge people. However I know my own mind, I could not knowingly end the life of a child whose heart was beating inside me I just could not.

It may be from reading about abortion methods ect, but I doubt it. I just could not actively take the decision to end another persons life. I recognize that it is necessary for other people, I have even been in the hospital toilet when my lovely friend went through with an abortion. I supported her I agreed with her decision, but I am still entitled to my views.

frakyouveryverymuch · 12/04/2011 06:01

ducky isn't the first on this thread to have said that, although possibly in not so much detail. It must be a horrific choice to make - I'm unutterably relieved that so far it hasn't fallen to me but if it did I don't believe I would terminate either, although the idea of carrying a baby only for them to die in pain shortly after birth makes me sick to my stomach. So although there are those of us who wouldn't it doesn't preclude an understanding of the reasoning behind the actions of those who do/did/would.

exoticfruits · 12/04/2011 07:39

So although there are those of us who wouldn't it doesn't preclude an understanding of the reasoning behind the actions of those who do/did/would.

Very true. Don't judge a person unless you have walked in their shoes. I am very grateful that I have healthy DCs and haven't had to make agonising decisions. I have had tragedies in my life and the one thing that it has taught me is that although you can imagine what it feels like you can't know -until it hits you-and it is very different when it actually happens.

goingdownhill · 12/04/2011 08:12

I am in the unenviable position of being the mother that has faced this situation very recently. I can honestly say you have no idea of the choices you will make until you are faced with them. You would be amazed how quickly certainties change when it is a reality, for me it was the opposite I discovered that I could and would have any child with the ability to live a pain free life with some understanding of the world around them. If you had asked me 7 months ago I would of thought my criteria would of been different.

My daughter had 3 separate major brain abnormalities the prognosis for her was terrible she would have no more brain function than that of a new born, she would of had constant seizures and would be very unlikely to survive until the age of 2 at the most.

We took the decision to terminate. It is quite frankly the worst thing I have ever done or ever lived through. She is my fourth child and it is a huge hole in our family to not have her with us.

In our situation all the testing we had done was to give us the hope to keep going, her conditions were so rare it took a very long time to diagnose. Every amnio, blood test that came back clear allowed us to hope that maybe we could continue, maybe the outcome would be ok for her. For us it was the foetal MRI that bought our world to an end, when it showed huge patches of her brain missing and damaged. Testing is not always used as a reason to stop but a reason to keep going.

I can say with truth that I did what I did out of love as hard as that might be for someone who has not been there to understand. I could not allow a child of mine to live a very short life filled with pain and suffering. I have a child that is not NT so I am not striving for "perfection" my DS1 is not NT and is absolutely perfect to me.

I just want people to realise it is not a case of this baby not being good enough then moving on with your life. I am three months down the line from my daughters birth and I have PND and am on AD's. I spend sleepless nights going over and over this in my mind trying to find the answer in my mind that all this could of turned out differently. Every time I sob and cry because I want my baby back I always come back to the same point that if we had taken the other path it would be Alexandra who would be suffering and in pain now. As her mummy I feel it is my job to take on the agony and let her be at peace.

thefirstMrsDeVere · 12/04/2011 08:13

Having held my child in my arms as she died I think I am somewhat qualified to say that yes I would rather give birth than to terminate.

I would rather have the baby and hold them and cherish them for those short hours/days/weeks.

But again that is MY personal choice.

I cannot bring myself to judge others for choosing to terminate a pregancy when they have been told what might lay ahead.

You learn a lot when you nurse your terminally ill child.

sungirltan · 12/04/2011 09:33

goingdownhill - huge anti mn hugs and thank you for posting x

it seems on this thread that the parents who would consider terminating have passed no judgement whatsoever on parents who wouldn't but not the other way around which i think is sad.

goingdownhill · 12/04/2011 09:44

thank you sungrirltan. It is very kind of you to say that. All I am trying to highlight to people is that I don't always think that life at any cost is always kindest to the baby. Yes I could have gone forward and watched her struggle then die anyway. I really truly cannot understand why that is seen as a kinder choice. It would of course be an individual choice for any family that finds themselves in this hell.

I had a fantastic Paed during all this and she said to me sometimes the hardest part of her job is to let parents understand when it is time to let their child go. As a mother to allow your child to die is something that goes against every fibre of your being.

thefirstMrsDeVere · 12/04/2011 09:51

That isnt true though it is suntan?

I have seen your story before going and it is very moving and its important that you have a chance to put your story across.
I am sorry that you are having such a difficult time. You have lost your child and I know that pain too well.

You are welcome on the bereaved parents board x

goingdownhill · 12/04/2011 09:59

Thank you Mrs DV I know we have spoken before when I was really quite mad and you were very kind. I would never post on the bereaved parents board as I am aware there are so many people who think this is my choice. As threads like this never fail to highlight.

thefirstMrsDeVere · 12/04/2011 10:03

We are not like that over there going. Honestly.

But I understand your reticence. As far as I am concerned you lost your DD the same as I lost mine. They may have been on the opposite ends of their childhood and they may have been lost for different reasons but in my opinion that doesnt make any difference. The pain and the guilt and the big hole they leave behind is the same.

x

DuelingFanjo · 12/04/2011 10:08

goingdownhill, so sorry to hear of your experience.

frakyouveryverymuch · 12/04/2011 10:11

I don't think that's true, suntan. A life-limiting/threatening diagnosis is Hobson's choice. I don't judge people who terminate even though personally I feel that choice isn't open to me. In fact I sometimes wonder whether that makes me the coward, and I agonised for ages waiting for test results to come back and before scans about how I would feel if something was seriously wrong with the baby because I could conceivably be putting my beliefs above the wellbeing of my child.

Sometimes the person who takes the decision to terminate may be the stronger one.

CheerfulYank · 12/04/2011 11:00

Goingdownhill, I am very sorry to hear of the loss of your precious DD. You're right, no one can ever know what choice they would make in your situation. You acted as a mother, wanting to spare your daughter pain, and I'm very sorry if any of my posts were seen as judgmental toward someone in your agonizing situation.

My point, which I may have made rather badly, was that DS is an entirely different thing to some diseases. People with DS can and do live long, pain free lives. (The life expectancy for people with DS is now pretty close to average, if I'm not mistaken. The oldest living person with DS is in his 80's and actually lives in my state. He was born at a time when people with DS usually didn't see their tenth birthday.)