Small-moderate vsd

[Vsdmum]

My DD is coming up 6 weeks old and was born prematurely. We knew prenatally that she had muscular vsds and that we would only know the impact after birth. Despite a very positive outlook (one moderate, and lots of tiny ones in an ideal location) she began to show symptoms early on and is currently on diuretics to help the heart, and milk to limit fluid intake. The meds and milk have had a good result, the heart is working less hard each week.
The doctors have said surgery is now likely but I’ve had no indication when and for how long she will be on meds for. Does anyone else have an experience with this - did your little ones have a vsd, put on meds and the hole miraculously closed/shrunk? If not, did your little ones stay on meds all the way up to surgery? Living week by week with such a delicate human is scary, I just want her to be well. TIA for any stories you can share.

Sorry not very similar, but my little girl was born with a severe heart defect where her arteries were the wrong way around. She also had a hole though hers was an ASD not VSD. Anyway during her surgery to switch the arteries, they also repaired the hole (which I’m guessing is the same op your little one will be having?) everything was fine with the repair for her hole, though of course the thought of them going into surgery is just awful!!
anyway what im trying to say is that for my little girl, the repair of the hole was really straightforward and is never even mentioned now when we see cardiologist. Also the cardiac surgeons are just the best and are real life super heroes.
not sure where you live, but our local hospital had a team of cardiac liaison nurses who are just fab and I often email them - might be worth finding out if you have their support in your area? Xx

Thank you KC1234, your little girls situation certainly sounds more complicated - I’m glad all turned out well. Can I ask, at what age did they operate?
I’ve not been given much support/guidance yet from the local cardiology team, which is probably why I’m feeling extra anxious as well 😭 xx

Congratulations on your little girl.

I used to work in Cardiology. Generally surgeons want the child to be as big as possible.

So as long as she is doing well they will probably keep her on the medication with regular echos.

Caveat I have not worked in cardiology for a long while.

I was born with a hole in my heart, it closed up by itself and its not needed any monitoring or had any other effects since being signed off.

My little girl was operated on at 9 days old. But this was because of her arteries and not the hole. As someone else said it’s likely they’d want her to be as big as possible?

Please see tiny tickers website, they are a fantastic heart charity and you can read other parents’ stories there and they are generally so useful!!

I was born with a vsd. I was monitored by the consultant until I was 2 and then had to have antibiotics if I had an operation until I was 16. No surgery. They didn't want me to have a homebirth with ds2 because of it but I had a scan of my heart and they said it had closed so no further intervention needed.

Thanks everyone for your posts, so reassuring that if she does need surgery in first few months then there are plenty of other babies who have had surgery much earlier and been fine.
and amazing elliejjtiny that your hole closed up! I’m still praying my little one’s holes close/reduce in size 🤞 we have another echo in 2 weeks.