All parents of children with Down's Syndrome please help us!!!!!!

[cupcake78]

What are the realities of parenting a child with Downs Syndrome????

Today has been a living nightmare!! Our baby has two abnomalities one is very minor and really doesn't worry me but the thickness of the Nuchal fold is very significant and this in conjuction with the other minor problem all strongly point to Downs Syndrome.

We have been offered a Amniocentisis and initially said not till after the risk of miscarriage (as I have already had two m/c's in the last 18 months) had passed but we have now decided that we need to know the facts before considering our options.

Because I am 21 weeks + IF we do decide to terminate (really not sure) then we only have two weeks to decide and the test results take over a week to come back.

I can't sleep, eat or drink and I am sick I have lost over a stone in two days and can't see an end to this.

We have nobody to talk to about this and just need to know how much of an impact does it have on your life? and what is the good and bad points. Please be honest with us.

This is the hardest thing I have every had to do.

As a salt working with people with learning disabilities,may I just add that generally speaking, DS really doesn't give rise to any serious issues at all.

I know so many people with DS who lead full normal and happy lives and have been running communication groups today for both small children and adolescents.

i wish you could all have seen the young man with DS in my group today. Bags of charm,poise,confidence,warmth and humour and a real leader who is so admired and respected by his classmates.

He will lead a very happy and fulfilled life,I just know it.

Thank you all.

The results are back and my baby does not have Downs Syndrome. Know child/person is perfect and it may have development delays, growth problems etc due to the other things that have been found.

Thank you all for your help support and advice. I have learnt so much and like I said earlier I am a much better person for knowing.

I agree that a mothers love for her child is unconditional. I have already lost two children in mid pregnancy. The difficult decision for us was that we knew before the baby was born and would have to make an impossible decision. As parents could we really bear to look at our baby in hospital being subjected to operations, frustrations while growing up etc knowing that if we had made the other decision our baby would not be in that situation. But also what if the child was to grow up and have a perfectly happy and fulfulled life full of laughter and friends.

It was the decision that made it impossible. Had or if we do have a child that struggles with some things, but were not given the option prior to birth, then we would take it in our stride and make that child be the very best that it could,like any good parent aims to do.
It really makes me wonder if some things are best left to chance.

Hello cupcake

Have been on holiday so have only just seen your thread. I completely agree with your last post - I did not have any decision to make when pg with dd - we were completely unaware of any problems. My dd has v rare chromo disorder (there is only 1 other case known about) and I carry it. I'm pretty sure that had we known and been given the scenarios of feeding, breathing, heart and kidney problems, low muscle tone, sensory impairment, sld etc we would taken the agonising decision to terminate - it would have looked so bleak and hopeless.

My dh and I are so glad and grateful to have our dd - she has survived a lot. She is an absolute joy and although she still has some health issues, we no longer fear we are going to lose her at anytime (there are some piccies of her on my profile)

However, I have been on the other side of this situation as I am pg now. Cos I carry the chromo abnormality (which in another form would be incompatable with life), we opted for pre natal testing this time round. The results came back fine. However, I found the whole process so stressful and agonising. Was mortified by the prospect of a termination and at times wished I didn't know about it all and could just blithely go ahead with my pg like everybody else. Yet at the same time, I did need to know - and I was fortunate that I had the option of knowing. V contradictory and confused thoughts and emotions.

Anyway, sorry to have gone on! If you ever want to talk about any of this, please feel free to email me. Wishing you all the best for the rest of yr pg, birth and beyond x