Baby with hole in heart advice

[newmama86]

Hi, i found out at my 16 week scan that my baby has a large AVSD. The doctors said she will need surgery at 2 year old but seem optimistic that she will live a normalish life. I am finding the pregnancy rather stressful and have had severe morning sickness and fatigue. Im worried im not eating as healthy as i want to due to nausea and not excersing enough and want any advice from anyone who's been through this as to what i should be doing while pregnant to help support my baby. Any thoughts/advice would be really appreciated

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.

Thankyou very much, that means a lot. I have made the mistake of googling and got myself very upset, but the consultants have for the moment advised a more positive picture than some of the things ive read online so im going to take your advice and not google!! i wish i could eat better to give her the best chance, but im doing my best i suppose. I was sure i should be more energetic by now, but at 17 weeks i still need to nap/rest on the sofa at times which i didnt need to do with my first daughter. Maybe its a sign that i just need more rest?

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.

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

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.

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.

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.

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.

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

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

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.

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!!

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.

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.

I didn’t realise feeding could be difficult, that’s really good to know so I can be prepared. I’m in Surrey so baby will be having the operation in Royal Brompton. I’ve not been there but might ask to visits. In general, did your babies arrive around due date or early/late? And we’re you able to have normal deliveries if you don’t mind me asking, so I know what to expect.

Yeah it was so stressful. Had the Dr's saying things like 'ahh if it your first baby?' as if i was being neurotic. We got there in the end when I had a meltdown in the hospital 😂

Hi OP,

I was born with an AVSD (in 1997, so my parents didn’t find out during a scan). They found out at 3 months and I had open heart surgery at 6 months to repair both holes. I was out of the ICU within 24 hours and home soon after, it was very successful. I’m now an adult who is proud of her open heart surgery scar, has run half marathons and has done triathlons, hiked in the Andes and Himalayas! Just wanted to write as someone that had this condition and offer support that your baby will go on to live a full and happy life. It must be very worrying now, but it isn’t doom and gloom ahead. I have not had any problems since and no follow up surgeries and nor am I on any lifelong medication. If you wish to PM then you are more than welcome to. Hugs. xx

I don't think it happens with all heart babies, but in our case she would get so tired feeding and fall asleep. They burn calories at a much higher rate because their hearts are having to work harder. Once we got a diagnosis we were given high calorie formula for half the feeds, and the other half she had breastmilk. Although I had to start pumping because she stopped latching after getting used to the bottle.

Mine was 1 day early, normal delivery and a chunky 9lb (but it took her 5 weeks to regain her birth weight)

Just to add to reassure you, my mum had a normal healthy pregnancy and gave birth normally, and I was a 6lb baby. I didn’t gain weight quickly after birth though

My daughter had a large AVSD as well. She had surgery at 12 weeks old to repair it. She's now 8 and thriving, and just under yearly reviews by the cardiac team.

I also found pregnancy incredibly hard, and spent most of the second half off work with anxiety. I wasn't allowed to take anti depressants (they decide on a case by case basis) but was under consultant care and the lovely mental health consultant said I could stay overnight whenever I felt I needed it.

Before we gave birth we were given a tour of NICU, and we were able to ask any questions we had.

My DD ended up in SCBU for 2 weeks, about 48 hours for oxygen and monitoring, and then the rest for feeding. She came home with an NG tube, which I was terrified about, but was actually fine.

I found the 2 weeks in SCBU quite helpful, it gave me time to come to terms with her needs, and to recover from the c section. Plus there's a community of parents in the same situation. We were given a Ronald McDonald room as well.

My main recommendations for you are to prioritise self-care during pregnancy, and prepare friends and family for the first months afterwards. You'll want to be really strict about people not visiting if they're unwell, as your baby will be vulnerable.

Heart surgery was stressful, but there's so much support in hospital which helps. My mum basically gave up her life for the first 3 months to support me, which was amazing.

Also, do learn to ask for help from friends and families, and if they offer, give them specific tasks. We had help with things like getting shopping in, picking my daughter up from nursery, even doing our washing! It made so much difference, and they feel like they're helping as well.

I wish you and your baby all the very best.

To answer your questions, my DD chose to come early at 37+4. We'd planned a c section at 38 weeks (due to a difficult previous birth). Her birth was amazing, she literally came out punching the air! She was a great size as well, thankfully.

I've several friends who had kids with Complete AVSDs - one of the kids was a trooper, needed no feeding support or time in hospital, went in for a repair at 6 months and it all went smoothly. Another had surgery a bit sooner, but stillc all ok. All 3 of the kids are doing great now, no problems or follow up surgery.

Thanks so much ladies, that’s good to hear all the babies are doing so well and you are all a real inspiration!! We were told that it was unlikely we would need a NICU stay, but not guaranteed as still very early and don’t know the extent of the Avsd. Any advice on preparing for a nicu stay would be much appreciated as i didn’t have to with my daughter x

Hi all, baby has arrived and we’ve been told surgery will need to happen earlier, around 6 months. She’s struggling with feeding, we started off well with breastfeeding but am now expressing and high calorie formula. I just wanted to ask if anyone managed to breastfeed after their baby had surgery? Xx

Congratulations on baby’s arrival!

no advice - sorry - but congratulations!

Super congratulations and gentle hugs!

I didn’t manage this myself but from my extensive experience of dozen of ‘heart’ mum friends I would say yes, definately possible. If you can keep expressing, even a little, until after surgery then there is a really good chance that baby can learn to feed directly from you afterwards. I just couldn’t keep the expressing up that long myself but I know people who have and the hospital should support you with this as much as possible.