Leaking heart valve seen at 16 weeks

[Hopingforbetterluck]

We’ve known since our 12 week scan that there may be something wrong with our baby as there was a high nt of 6mm. We opted for a cvs which has come back clear for downs, edwards and patau - we are still waiting for the rest of the results.
A fetal echo scan at 16 weeks showed a possible hole in the heart but of more concern was a leaking valve in the right side of the heart. They’ve told us that at the moment it’s moderate but if it gets any worse it will cause a build up fluid and the baby will likely die in the womb. I’m just so devastated. After two miscarriages in the last year I was really hoping that this time would be it for us. I’m just wanting to hear from anyone who has been through similar, good or bad outcomes so I can feel better prepared for what might happen. I’m terrified that our next scan we may be advised to end the pregnancy.

Hi there, I’m so sorry you’re going through this, it is absolutely devastating and this limbo / uncertainty period is truly awful. We’ve recently been through something similar: our NT was normal, but we were told at our 12 week scan that the baby’s heart was structurally abnormal. Subsequent cardiology appointments unfortunately revealed an incredibly serious series of heart defects that were not compatible with life (there was a slim possibility of surgical intervention after birth, but the prognosis / quality of life was appalling). We made the heartbreaking decision to TFMR at 14 weeks.

I’m sorry my story isn’t a happier one - I wanted you to know that you’re not alone if indeed the worst happens. I think the medical professionals don’t usually advise you to terminate per se (they didn’t with us, they just strongly agreed with our decision once it was made) but they will be clear about the prognosis so that you have all the information to make your decision.

We were told that CHD is the most common birth defect and is usually solvable surgically. Ours was (essentially) the worst that they typically see, but for many, it’s not that bad. I really hope that your baby is in that more hopeful category and you are given some better news at your next scan.

I don't have experience of your baby's condition, but I do have experience of other congenital heart defects. I can't give you any specific advice, but I can recommend looking at the website of the charity Tiny Tickers www.tinytickers.org/. It's dedicated to improving the early detection and care of babies with serious heart conditions, and is a great source of information and support.

Thank you for your replies.

Leaf86 I’m really sorry to hear what you’ve been through. It really is a heart breaking situation to have to TFMR. I understand the doctors might not advise it outright but if the prognosis for quality of life is bad I feel like I’d rather put us through that suffering now rather than have the baby suffer later on. We also have an older child to think about and how it would affect him.
I’m finding it difficult to be hopeful at the moment as throughout our miscarriages we had a series of things happen to us that were all supposedly rare and happen to less than 1% of people- unfortunately it’s left me with a bit of a bleak outlook and I find it hard to believe that anything but worst case scenario will happen to us. Thanks for taking the time to tell me your experience.

TheFoldOx thanks for this, I will take a look at their website

I am sorry you are going through this. I hope you don't have to wait too long for your next scan. We found out at 24 weeks that our baby has a heart problem and it has been very overwhelming and scary.

I really hope you get some more positive news at your next scan.

I’m sorry to hear that your baby also has a heart problem. Thanks for for your reply. As you say it’s very overwhelming. We have 3 weeks to wait for our next scan which seems like forever on top of the 4 weeks we’ve already had to wait for other test results.

Do you mind me asking what heart condition your baby has been diagnosed with. No worries if you’d prefer not to talk about it.

The baby has pulmonary atresia with VSD. We were told this kind of condition can be linked with Digeorge syndrome so we had an amniocentesis but thankfully that came back all clear. It took about 2 weeks for the full results to come back and the waiting was really hard. The cardiologist advised us that the baby will need surgery soon after birth to fit a stent then open heart surgery at some point but was quite reassuring that the outcomes are normally good. But to be honest I am not sure I took in all the information as it was all quite a shock.
We have another follow up next week so we will find out more then.

I hope you get the rest of the results from the CVS soon and it is good news.

@Hopingforbetterluck I'm sure the next three weeks will be tough, but remember to look after yourself in that time. There's a lot of information and support out there for parents of babies with CHD, and while it is by its nature not specific to you and your baby, it gives a good idea of the general picture.

@Cantchoosename, I've a little indirect knowledge of pulmonary atresia (my eldest DS was born with a different CHD). The VSD is normally a good think with your baby's condition as it helps the blood to mix across the heart, and I expect that they will also be put on prostoglandin from birth to help keep the patent ductus arteriosus open. Your time in intensive care pre and post surgery will be tough, scary at times but the care will amaze you.

I'm hoping for the best for you both. I'm happy to offer any support I can and to answer questions from a parent's point of view. DS's condition was different and not diagnosed until he was a day old, but many things will be similar.

@Cantchoosename it’s so hard to take on board all information when you’re upset. It sounds like your consultant is positive about the situation. I hope it all goes well at your follow up appointment next week. I’ll be thinking of you

@TheFoldOx thanks for your message and offer to answer questions. It must have been a shock for you also to find out your DS had a condition at 1 day old. I hope he is doing well.
Yes, I remember the cardiologist said the baby will be given prostaglandin to keep the ductus arteriosus open then have the stent when possible via keyhole surgery. I may come back and ask some questions or advice about managing with a baby in NICU at a later date if that is okay? I am trying to just take one day at a time at the moment and not think too far ahead.

@Hopingforbetterluck thanks for your message too, I have also been thinking of you and how hard it must be waiting for the next scan. How are you doing?

Hi @Cantchoosename, yes it was a shock finding out about his CHD - but there's never a good time, either before or after they're born. He's doing really well now though, six years old and people have no idea about his condition when they meet him. Some leaking valves and occasional mild tachycardia, but he lives a totally normal life. Please do let m know at any time if you have any questions, I'm happy to offer my perspective to anyone in this situation. Where are you likely to have your baby? We were in Nottingham and then transferred to Leicester after he was diagnosed.

@Hopingforbetterluck I how things are ok with you. Do update the thread if you feel able, I'm praying for good news.

@Cantchoosename thank you, some days I’m not too bad and some days I’m struggling a lot. It doesn’t help looking online as from what I’ve read it doesn’t look hopeful - I need to step away from Google. The waiting goes on - I’ve still not had the full CVS results and it’s nearly 5 weeks since I had it done. I hope your appointment this week goes well.

@TheFoldOx thank you for your comments. It’s lovely to hear that your little boy is doing well. I have another 2 weeks until our next scan but I will update when I’m able to.