Coarctation of the aorta

[Ftgirlmum2005]

Hi guys, I’m currently 23 weeks pregnant with a girl due on Feb 26th. @ my 20 week anomaly scan the hospital detected a heart abnormality and referred me to st Thomas who then informed me there’s a high chance that my baby may have coarctation of the aorta and will need surgery to correct it alongside possible surgeries/medications throughout life. I was also told that most heart defects are paired with a syndrome and was offered genetic testing which I have decided not to go through with due to the miscarriage and infection risk. They are warning me about thing like turner syndrome which is something I’ve never heard of and research is a lot to take in. Just looking for some reassurance and a simpler explanation for what’s going on. Many thanks

I am an adult with Turner Syndrome btw.

Take it one step at a time. Please make contact with the below organisations who can provide information, advice and support, just to inform and help you to consider all your options and explain things to you hopefully in a way you can understand…

https://www.arc-uk.org/
https://tss.org.uk/

DS1 was born with a coarctation and biscuspid valve (not Turners though and no other syndrome). He had the repair on his second birthday as it wasn't picked up until he was 18 months, and he's now 28. He has regular check ups at cardiology and there's a chance he might need further surgery at some point, but so far everything is absolutely fine (touch wood). He can't have tattoos and would have to have antibiotics for some dental work, but he keeps fit and healthy and all is well.

Sending you lots of good wishes and positive thoughts - I remember how worried we were at the time, it can be very scary when they're so little.