This is my first post and I?m hoping for some help and advice from people with experience of DS in pregnancy and beyond. I'm 44 and 14 wks preg and received the results of a CVS a week ago confirming that the baby has DS. Being older parents we were aware of the statistics and weren't planning on having any invasive tests, but the results of our 12 week scan revealed not only a 5.5mm nuchal fold but indications of a heart problem resulting not only in a 1 in 2 ratio for Downs, but a 1 in 5 for Edwards and Patau. We are thankful that the baby only has downs, though we are quite frightened by the possible heart problems and won't know for another month or two the extent of it. Anyway, sorry for the rambly intro, but this is all new to us. We have 2 questions at the moment that we are trying to get some help with. 1. Does anyone have any experience of heart scans before 21 weeks? We have been referred to a pediatric cardiologist but they won't do the scan until then. There is a local private clinic (MUMS in the midlands if anyone knows it) who offer cardiac scans as early as 17-18 weeks. Has anyone done anything like this? 2. While our first concern is for the immediate health of the baby, we are also concerned about the long term prospects for the baby and his/her sibling (we have a son who is 2). In the usual tactful way that I'm finding that the health care profession "helps" people at such times, two of the midwives have felt the need to emphasise that we are not exactly young parents (42 & 44) and that we have to think of our son because the baby will be his "burden" when we are too old to care for him/her and/or when we are gone. I know from the whirlwind tour of the DSA site that many people with downs lead independent lives and the wonderful person at the DSA helpline said that legally speaking our son won?t have to have any responsibility for taking care of the baby (by then hopefully an adult) unless he wants to (though when I pointed this out to our community midwife she said that of course he would want to, implying that it was a bad thing that would burden him for the rest of his life!). Sorry again for the rambling rant, but as you can imagine all this is quite upsetting. What I?m wondering is if anyone has experience of assisted care/living for people with Downs and what these places are like. It?s easy to imagine the worst case scenario of old fashioned institutions, but I?m sure (hopefully) that this isn?t the case and that the options for people who can?t support themselves are not so bleak that our son does feel ?burdened? by the need to keep his sibling out of a horrible situation if s/he can?t take care of himself after we?re gone. We?d be grateful for any information people have about these issues as we wait to see how the baby develops.
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