Hi, I am looking for people that are or have been in the same situation as us. I am 14 weeks into my 2nd pregnancy and had confirmation last week that our baby will be born with Down Syndrome following a harmony blood test, we were given a 1 in 5 diagnosis that prompted us to do the further testing that lead to a confirmed result.
I have a DS aged 8 with a different partner that was conceived following 7 years and 5 attempts at IVF.
So to conceive naturally was unexpected but a wonderful surprise for us both , this is my partners first child.
Our initial reaction was that we would continue with the pregnancy, however we are now unsure and bouncing between continuing and terminating .
I am 39 and my partner is 41, while we know that we would love, adore and support this child if we continued with the pregnancy, our biggest fear is when the child gets older, how will we cope in our 70's with a adult with disabilities? (if we last that long!!!) We don't want my DS to feel it his responsibility to care for his sibling and we also don't want to be dependant on society but we are a standard family with an average income.
While we know that Down Syndrome Adults can lead independent lives with minimal support it all depends on the severity of the disability and we have no way of knowing the severity of the disability until birth. We have decided that we want to have the 20 week scan to see if there are any further problems that can be detected ie heart / bowels, but even then it will not be conclusive. I think it 's the fear of the unknown, I have spoken to 2 families. 1 has a Daughter aged 13 who is mildly effected, however they said if they had known they would never have gone through with the pregnancy which surprised me as they adore her, another was a distant relative who has a 48 year old Down Syndrome male who leads a fulfilling life but still lives at home and requires assistance like showering and personal care and they would not change a thing... My partner is very supportive and we are talking but he is struggling as am I, We would never judge anyone on the decision they make in this situation, however been in this position we feel lost and know that only we can make the decision for our family. We have spoken with the consultant who is putting us in touch with further families and I am researching as much as I can but how on earth do we make this agonising decision??? any advice / guidance that can be offered would be greatly received. Thanks a Mummy in turmoil