1 in 44 Down's Syndrome Risk

kingfisherblue · 7 December 2017 at 3:48PM

Most of the people that I know whose children have chromosonal disorders (and I know several) were under 35 when their children were born. There are so many different ones, and it would be impossible to test for everything.

One friend of mine has a disabled daughter who was a SWAN child (Syndrome With No Name) until she was eight. It was only because the family had volunteered to be part of a genetic testing research project that their daughter's condition was identified. It's a very rare condition, and she has since been the subject of articles in medical magazines in the UK and abroad. The family have conferences with doctors in the USA and Canada.

Regarding Down's Syndrome, someone stated that it can be severe. Yes, it can, but it can also be milder. A lot can depend on which type of DS (there are three types, Trisomy 21 is the most common).

I found that the doctors were incredibly negative when my son was born - I was 29 when he was conceived, so fairly low risk. I was told that my son may never walk or talk, was unlikely to ever catch a ball, would probably not be able to read or write.... there was nothing positive at all. My son was also born with four major, but rare, abnormalities that needed surgery at birth. He was given four hours to live. My little lad is now 19 years old, and can do all of those things and more. He carries a pad and pen everywhere he goes (and I mean everywhere! Even the bathroom). He loves writing lists, making up family trees, and finding out information about his obsessions.

Admittedly life has not always been easy, but he has a lot of medical conditions, more than any other child that I know with DS. In some ways, though, I've had more problems with my other son, who has High Functioning Autism (previously known as Asperger's).

Only you and your partner can decide whether to have further tests. If you do, make sure that you have considered your possible options if the results are not favourable. From personal experience, it seems that many medical staff assume that you will abort if tested positive for certain conditions, including DS. If you are likely to want to keep your baby in the event of disability, be prepared for the negatives and the possible pressure. Unfortunately I know parents who have faced this when they have received their results, and not wanted to abort (or been undecided).

I wish you both all the best, and remeber that although the chance is 1 in 44, that means that there is 43 out of 44 chance that your baby does not have DS.

betsie · 7 December 2017 at 5:00PM

A friend of mine in her 30's had a 1-25 risk of downs. She had further tests which still didn't give great results either. Her son did not have downs. He is now 19 and studying in America.

meer53 · 7 December 2017 at 6:23PM

My risk was 1 in 17. I had a Chorionic Villus test and 4 Amnio tests (to monitor for another possible condition) my daughter was premature but perfect. Yes, the tests were a worry but so was the thought of a baby with a disability, it's a very personal decision to make, the results took away some of my concerns but no pregnancy is ever risk free, tests or not.