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Heart defect at 20 weeks.

(8 Posts)
TT112 Tue 05-Nov-19 10:51:31

Hi all.
I had my 20 week scan where they found an anomaly with the baby's heart. I was sent to another hospital for further scans where they suspected that the baby had a right aortic arch. They then referred me to a specialist for further scans as my baby is always in an awkward position to get a definite answer.

I went to Liverpool Womens on Monday last week and although baby is in his usual face planting position the view was difficult but the suspected diagnosis is possible VSD in the bottom 2 chambers and a Double Arch (Vascular Ring).

I need to re attend tomorrow for further scans. Must say that the staff and the cardiologist were very reassuring and excellent at explaining the conditions. This is an IVF baby and my last chance at being a mum.

I have decided not to do the amniocentesis as for me it won't change the outcome. I am aware that there is a small chance of chromosome 22 defects.

Has anyone else had this diagnosis? What treatment plans were put in place?

Peacefullythoughtful Tue 05-Nov-19 20:02:11

Hi
My daughter has a right aortic arch diagnosed at the 20 week scan. I too declined the amnio as we had no soft markers of digeorge syndrome (22q11 deletion) . She is 13 months now , totally gorgeous and completely fine. The consultant called her RAA a variation of normal. It’s a scary time ( I remember it like yesterday ) but the cardiologists are amazing and there is so much they can do now. If I can help at all feel free to pm me. Take care

TT112 Wed 06-Nov-19 11:53:36

@Peacefullythoughtful Thank you for your reply. They initially diagnosed RAA. On our way to hospital now for the re-scans which will hopefully give us a diagnosis. Nice to hear im not the only that decided against having the amnio. There are no markers for Digeorge so far. Lovely to hear also that your litle girl is doing so well.x

MoreMaltesersPlease Wed 06-Nov-19 17:21:21

Not quite the same but I found out my IVF baby had congenital heart defects at the anomaly scan, like you we declined the amnio and opted to have genetic testing after the birth as we had gone through a lot to have our baby and there was absolutely nothing that would convince me not to give him every chance to fight. He's now 4 years old, on the surface he looks like a perfectly healthy child despite all his problems at birth and in his first year. When he was born (prematurely) it turned out he had other undetected congenital defects so his heart wasn't even the biggest concern. I remember all too well how terrifying it was to hear such news, but we have such amazing care for these children from the NHS, and there is so much support out there (lots of groups on FB and charities you can contact) so please don't feel like you have to go through it alone x

Peacefullythoughtful Wed 06-Nov-19 19:29:05

How did you get on with your scan today OP? Hope all went well

Ivfmommy2b Wed 06-Nov-19 21:51:08

Hi @TT112, I’ve not long been through exactly the same as u are currently going through. My baby is also from ivf so I know how your feeling. Same as u RAA diagnosed, had further scan at 28 weeks, same diagnosis as at 20 week. I did have the amnio, which was all clear. I was so scared. Cardiologist doesn’t need to see me again now until after baby is born, can deliver at a normal hospital, there’s an alert on my notes for the baby to be checked at birth. Cardiologist said 75% of babies with RAA don’t require surgery. There is a big thread on netmums on RAA, none of them babies have issues either which is so reassuring. Xx

moita Thu 14-Nov-19 09:42:54

My daughter was found to have an RAA at the 20 weeks scan. We referred to GOSH who also found 2 Vsds - one very large. I did have the amnio and it was all clear.

When she was born she did struggle to feed and put on weight so was taken to NICU. We stayed in a week but she soon started feeding and gaining weight. We were told she would need surgery in the first 6 months but the small VSD has healed and the large one is healing on it's own. She is nearly 2 and has escaped surgery.

Try and enjoy your pregnancy. VSDs are a common operation and you're in good hands by the sound of it. These babies are tough little things!

TT112 Tue 19-Nov-19 11:22:32

Hi all. Thank you for all your messages. Ive now had the new scan which revealed no VSD. However the Vascular ring/Double arch was confirmed. Extra care and Peadiatrics at the birth. They explained that issues may present up to 2 years in either breathing or feeding. They gave loads of advice and put me in touch with a Cardio nurse from Alder Hey. Feel much better because i now know what im dealing with.

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