Baby with hole in heart advice

Just to say I was born with a VSD and am a fairly healthy 45 year old now! It’s very positive they already know about it and hearts are known so much about and can get sorted very easily.

That must have been so hard - the not knowing what was wrong and not being listened to 😢

I found out at the 20 week scan, so was lucky enough to have time to prepare. But I still felt like I would have benefitted from a lot more information in advance about how it would actually be.

Hi OP

My dd (now 16) was born with a large (ish) VSD - I don’t know what the difference between an AVSD and a VSD is I’m afraid - but also a double outlet right ventricle, which means she had both arteries on the same side of where the “wall” should have been.

Pregnancy and birth weren’t affected by this.

She had an operation at 9 weeks old to put a band on the pulmonary artery to stop her lungs being flooded, and then another op to repair the VSD, in such a way that the wall then sag between the arteries as it should have, at 9/10 months. This was all at Great Ormond Street, who were amazing.

This was all very stressful at the time, but she is now a completely healthy 16 yo. Since her second op her heart hasn’t made the slightest difference to her life at all.

The bit that was really difficult was from about 4/5 weeks old until the first op, as she couldn’t really get enough calories from her milk, due to the extra effort needed to breathe. This meant she basically wanted to feed all day and all night. This is where I’d look into getting extra family support, getting your other half to take extra paternity leave, as it was really, really hard - and this is what I’d have liked to have been warned about before she was born.

BUT I don’t think all babies with VSD are the same - my dd was worse than she would otherwise have been re sleep because (as it turns out) she also had an undiagnosed tongue tie. In any case, your baby might need high calorie formula milk - and again, something that added to our problems was that DD was breast fed from the start and then refused to take a bottle to top up with formula. So it might be worth having some conversations about that.

Please do PM me if you want to!

Im not trying to be doom and gloom because dd is a happy and healthy 16 yo, predicted all 9s in her GCSEs, very involved in youth politics etc and lots of nice friends. So it’s all good really!!

Also I don't know what area you're in, but the nurses at the Leeds congenital heart unit are incredible. I was able to call them or email anytime with any questions and they even offered a counselling service after surgery. Hopefully other hospitals have a similar service.

My baby had a large VSD but it wasn't picked up during her scans. We only found out when she was a few weeks old due to feeding problems and struggling to gain weight. This time was so stressful as I knew there was something wrong but no one would listen to me. So it's positive that your baby will be monitored and have a plan put in place.

She had her surgery just before 5 months old. I won't lie, it was the hardest thing I've ever been through, BUT as soon as she woke up, all the problems she has instantly disappeared! She made a full recovery and it's surprising how quickly they recover! She's 3 now and we still see the same Dr who have me the bad news for her check ups. The last scan she said you would never guess that she's had surgery, her heart is completely healthy.

My biggest regret is feeling like I lost those first few months because I was consumed with worry. I know it's easy to say, but have trust in the Dr's (they're incredible) and try not to let this ruin your special moments with your baby. Feel free to ask if you have any questions x

Thanks so much everyone, this has helped me so much! I have written down the questions, which I would never have thought of, and feel so much more positive! Is there anything I should no/ any advice for the early weeks? X

We had similar news, our baby was operated on and was fine. The recovery was very quick. I don't know how different it is for a toddler who is more mobile but I'm sure you're baby will be fine. I wish you both the best.

Don't worry about your diet as you can't help being nauseous. Try not to be too stressed or try to learn ways to destress if possible. A normal amount of stress is part of life and to be expected but extreme stress isn't good for the baby.

That is something I'm a bit sad about bc my pregnancy was very stressful for several reasons but don't blame yourself for anything as there's so much that's out of our control.

newmama86

Please don’t worry, and please don’t blame yourself, easier said than done I know! (I still have phases of guilt).

I have a 24.5yr old who was born with a hole in heart and other defects, she had minor procedures early on, then a full correction at 2, and also had to have a valve replacement a year ago. She lives a normal life, runs, gyms, has been travelling (she got travel insurance even whilst on a Op. waiting list!). We have always been told that she could have children if she wishes, but would be closely monitored.

At least you know before birth, we didn’t, she was premature and they picked up abnormal sounds in her heart whilst in NICU and referred her for a scan.

Just eat as healthily as possible and rest when you can.

If it is ‘only’ a large hole, it will be repaired and then she will hopefully be fine going forward.

Whereabouts in country are you, do you know where your nearest specialist children’s heart hospital is?

Feel free to message me if you wish.

There is also a good charity called heartline, which supports children with heart problems.

This is really a moment where you have to take the doctors' advice and not google. If you continue to be very concerned then perhaps going for a second opinion may help you put your mind somewhat at rest. Please consider how good it is that they've already spotted it so that an action plan can be put in place - in the past this type of (relatively common) defects would only be discovered after birth if babies had trouble breathing or eating or even much later. My daughter was born with a simpler heart defect: an ASD. We discovered this after birth, as we were lucky to have an attentive HV. She had a percutaneous closure procedure once she was 3. I know that this was a far easier fix than the one for an AVSD you are facing, but I remember also worrying a lot at the time. You may find it helpful to get in touch with a charity for congenital heart diseases, there are quite a few - depending on where you leave. Some hospitals also have a lot of patient info available on line.
I hope you realise that this is not your fault and there is nothing you can do now to change the situation. All you can do is make sure that you stay healthy by indeed eating as healthy as much as possible, sufficient resting etc. I don't know how far you are in your pregnancy now, but it is quite common that the first few months are worse than the middle/end part in terms of nausea.

Hi Op, congratulations on your pregnancy! My daughter has a heart condition (not avsd though I am very family with this condition due to multiple 'heart mum' friends); hers was diagnosed when I was 16 weeks pregnant and the things they told me, such as how stable she would be at birth and when she would require surgery, were incredibly accurate so the fact that they don't think baby will need surgery until age 2 is incredibly positive. None the less avsd is a condition that can have a wide range of normal so if i were you I would ask questions and think about the following in your future consultations:
How will birth be affected? Can you give birth naturally (probably!) and are there any concerns about where you give birth such as needing to be at a specific hospital.
How will baby be at birth, is it likely that they can come straight to you or will they need immediate checks from doctors. Will they likely need oxygen/a short stay in nicu? When might you be able to take baby home?
What signs should you look out for? Will baby have low oxygen, find it hard to gain weight etc?
When will the first heart check after birth be? And where? How often will baby need monitoring?

Hopefully most of the above doesn't apply to you, but it's good to think about. I was offered the chance to visit/tour the cardiac hospital that my daughter would be at whilst I was still pregnant.

No advice OP but just sending a big hug and wishing you both the best

Each pregnancy is different - you just have to go with the flow - I get that is not always easy!

You were probably getting a bit more rest with your first - no older siblings to run about after…

And step away from Google - you can google a cough and convince yourself you’ll be dead within the hour!

You will be able to eat better in time. For now, eat what your body tolerates.

And if you have questions, no matter how silly you think they maybe, ask your medical team. They will support you, and that will help keep your worries at bay.

It's tough news to hear, but know you are doing just fine. It's not your fault, it's nothing to do with your diet or exercise, so don't get too hung up on what your are eating or doing.

Just try to take each day, and eat what you can, and don't sweat if the only thing you can keep down is dry toast - your body will prioritise your babies needs over your own. Keep taking your vitamins, and rest when you can. Listen to what your body is telling you! Your sickness should ease in time, and then you can eat properly again - with a few added treats as well!

Listen to your consultant, and don't start googling! When baby is born they'll probably do further tests, and then they'll put a plan in place. Until then, do your best to be reassured they they know of the potential issue already, so it can be monitored. It's not an unusual thing, so the doctors will have plenty of experience to go on.