21 weeks and diagnosis of tricuspid atresia

[mrsS1258]

Hi ladies,

Well, having had our 20 week scan on Wednesday, the sonographer was not totally happy with what she saw with the heart so referred us to Bristol for a fetal cardiac scan with the specialist. That was yesterday and my whole world has been turned upside down. We have been given a diagnosis of tricuspid atresia and pulmonary atresia, which means the right side of the heart is currently shutting down. They believe I may have had a virus a couple of weeks ago that has caused this as it appears such a recent thing with that side of the heart being a normal size currently.

We have been given 2 options, firstly, termination, secondly, carry to term and the baby will need at least 3 major heart surgeries to allow him to live, albeit not a "normal" life, He won't be able to run, ride a bike, and may even suffer brain damage (if he doesn't already have a syndrome of some kind) - we are having an amnio on Monday but essentially, we have to make a decision regarding our unborn baby within the next 3 weeks. Both options are heartbreaking to me and my world is just falling down around me - I have a 17 month old little boy who I have to stay strong for.

Has anyone been through this with either outcome?

Becky

Oh Becky, I haven't been through this, but I couldn't let your post go unanswered, what a heartbreaking time for you. No decision will feel right, even though whatever decision you come to will be right. Have you contacted ARC (Antenatal results and choices)
www.arc-uk.org/ they really are fantastic because it is run by people who've been through these things and do know the agony you are going through

Hi Becky

My baby was diagnosed with a similar, left-sided anomaly & we were told a similarly bleak outlook. We also had a 2 year old at the time of diagnosis. 15 years later, our son is doing his GCSEs. He runs, rides a bike and leads a 'normal' life, contrary to what we were told. He has no obvious learning deficits.

The charity Little Hearts Matter (lhm.org.uk) exists to support families with single ventricle disorders - you'll find lots of people there who have faced this and made different decisions.

I hope the amnio was ok today. I'm happy to speak to you via pm if you think I can help.

This is a hard road, with tough choices, but you will find a way to get through this, whatever you choose.

xx