Down's Heart Group


After 20 years of trying for a child my wife and I are overjoyed to find she's pregnant naturally after doing ivf etc. My wife is diabetic and is 41 so we've got quite a few things going against us. We've just had a scan today and have been told that out little girl Amelia has a heart defect and only one kidney. My brother is Down's syndrome and as Alison is classed as a geriatric mother we know there is a higher chance of downs.

At the moment we have no idea how serious this is or what's happening. My heads all over the place. I'm ecstatic that we're having a baby but now I'm terrified that they aren't going to be ok. Don't really know what to do. 😞

6 Replies

Hi Tom,

Congratulations on the pregnancy but sorry that it's not going as smoothly as you deserve.

Have they told you what the heart defect is? And have they looked for soft markers of Down's Syndrome? If you are in the UK, please do give us a call at Down's Heart Group 0300 102 1644 or email us direct at and we'll do all we can to help answer questions etc.

1 like

We didn't find out that Alison was pregnant until she was 20 weeks in. We've missed the chance for a lot of the early tests for things. We can have a test now, I can't remember what it's called, where they will take a sample of fluid which will tell us everything we need to know. It carries a small risk of miscarriage though. But it's very accurate.


If you don't want the risk of an amniocentesis, they can look for markers on a detailed scan that can give you an idea of whether Amelia has DS or not.

Did they say what the heart defect is? Babies with DS can have most of the different heart conditions, but some are more common and might give another clue for you.


Ok, thanks. I can't remember what they said. I think she said it might be a hole in the heart or a missing valve.


Hole in the heart is a very general term that covers several different types of heart defect. If you can ask them for the technical term for the defect they are seeing, then we can provide you with more detailed information to help understand what is wrong and what that might mean for Amelia in the future.

Call or email when you know more and are ready and we'll get back to you asap.


Thank you. X