20 week scan - only saw one heart chamber

[abbaroony]

I had my anomaly scan at 20+5 today and the sonographer could only see 1 chamber of the heart. She said that everything else looked as it should but that this is a significant heart abnormality. We have been referred to fetal medicine and are going for a follow up scan tomorrow.

I know that really we just have to wait until tomorrow when we can find out more, but I was wondering if anyone has been through a similar experience?

I feel completely pessimistic - the way that the sonographer, and then the various people who have called me this afternoon about tomorrow appointment spoke to me, made it sound like they were offering their condolences after the worst news. My husband in the other hand is being really optimistic, saying that until we know more we shouldn’t worry and that he thinks that essentially it’ll all be fine.

I’m just finding the not-knowing so hard.

Just wanted to send my condolences. This is an incredibly stressful time and I wish you and your partner all the strength to be able to weather the storm.

abbaroony I've just caught up with your update and I'm so very sorry for the decision you have to make due to your baby's heart :( its the worst feeling ever and I'm sorry your having to feel it too

Thank you so much everyone for such lovely supportive messages.

It seems that tricuspid atresia is a specific type / version of hypoplastic left heart, which I have been able to find more stories of people experiencing. It’s so hard though as there seems to be such a wide range of outcomes.

I had an amnio on Monday and got the first set of results back to say that the baby doesn’t have any of the major problems that they test for, but we’re now deciding whether to wait for the rest of the results to come back before making a decision on how to proceed.

At the moment we feel that even if the heart problem is the ‘only’ thing wrong, that TFMR is the right decision for us, and I’m not sure if after making that decision that we should just ‘do it’ rather than waiting for the rest of the results and lengthening the process?

I think I’ve started to come to terms with the fact that this pregnancy isn’t going to end in the way that we’d hoped, and now have to get my head around going through this heartbreaking process and grieving for our baby.

Sending so much love to anyone who has already been through this. I can say with absolute certainty that TFMR is not an ‘easy way out’.

Hi love, I really recommend looking at the Brompton Fountain and Tiny Tickers charities. Treatment for HLHS can be brutal but most infants cope well with the surgeries and families are very well supported. Have you been able to speak to a paediatric cardiologist about what care after birth would look like so you can make a more informed decision? x

Certainly only you (and your partner) can only decide what's best for you once you are well informed by your doctor(s). And no one can judge whatever decision you make as the circumstances are specific to you.

Whatever happens, I wish you strength and resilience in the coming months. Take small comfort in the fact that you have found evidence of people in comparable situations and overtime have managed to manage the circumstances, you will too.

Best of luck

Thank you both.

@PigeonPigPie I feel that we are making an incredibly well informed decision. We have spoken to numerous specialists and understand (as well as anyone can) what would happen after birth and beyond.

This is of course an incredibly personal decision so I don’t go in to all the ins and outs of how we have reached the decision that we have, but please don’t think that we are making this lightly or without being properly informed.

What a dreadful thing you're having to deal with @abbaroony. You are doing everything you can to make sure your decision is informed and right for you and your DH.

Take care of yourself.

Sending you massive hugs as a fellow hlhs mum and if you have reached the decision you have and are at peace with it then I'm glad for you as it is such a hard decision to have to make. With my ds we didn't "get" a choice as ds's heart wasn't able to be operated as as it was too broken with his hlhs. Even if it wasn't as bad I would of still went with tfmr as I didn't want him to be put though operation after operation after operation

@abbaroony

Thank you both.

@PigeonPigPie I feel that we are making an incredibly well informed decision. We have spoken to numerous specialists and understand (as well as anyone can) what would happen after birth and beyond.

This is of course an incredibly personal decision so I don’t go in to all the ins and outs of how we have reached the decision that we have, but please don’t think that we are making this lightly or without being properly informed.

Apologies if it came across that way - just wanted to offer some positive stories if that was something that might be helpful to you. Glad you feel you've been given all the appropriate information to support you in making your decision.

Sending you much love and strength @abbaroony.

Sending you strength and love, @abbaroony. It's such a difficult thing to go through and I hope all goes as well as possible for you. It's hard to find the right words here, but you're certainly not alone, and it does get easier eventually even though everything probably seems bleak at the moment.

I had a tfmr five years ago and the baby had a myriad of heart issues but they were also looking into chromosomal abnormalities. Once it was clear that tfmr was the right decision, I went for it even though we were still waiting for the full karyotype from the amnio. It was tough trying to work out if I should wait or not, but we had an amazing cardiologist who was very honest with us about what the baby's heart issues meant in terms of life expectancy and quality of life. Even though it was hard to hear, it certainly made it easier to make the decision and I'm grateful for that. It sounds like you have been able to access plenty of information, which is good.

Please feel free to message me if you ever want to talk. Take care.