Baby with hole in heart advice

My now junior school age DC had frequent desaturations especially during sleep. They have had 4 surgeries now, same thing every time. They play sports, sing, dance and generally enjoy life. No physical, mental or psychological effects have be seen. Its not a scientific study, but a real life anecdote that I hope will help. x

No of course, just nice to have a bit of hope in this pretty awful time x

@Mama8023 yes, that’s my understanding that it doesn’t cause any longer term problems or complications but I’m afraid I don’t have any stats or info for you x

Hi @DuluxPaint, thanks for the response. Yes I was told similar, I just want to understand if babies can tolerate this without long term complications?

Hi @Mama8023this is tricky because for a ‘typical’ baby sats in the 80s would be terrifying! However for heart babies, they sometimes have to take a pragmatic approach. When I was in with DD there was a baby opposite who was on the ward sitting at mid 70s most of the time, it wasn’t ideal but the doctors didn’t feel it was a reason to bring surgery forward.

Hugs to you, this last stint before surgery is the pits.

Hi everyone,
we’re a week away from surgery for our baby and really concerned about her frequent desaturations. Doctors are saying that oxygen levels of 80% are fine but online it says different and she is frequently below this for short bursts when asleep. Did anyone else experience this with their babies? And did it work out okay?

Hi @newmama86 how are you doing?

I found that the support of friends and family was invaluable to me. They were all just awesome. Its full on having a child with constant needs so you must make sure you have someone to talk to, and some time and space to be you as well. It sounds hard, but try to ensure that both you and your partner support each other in getting some downtime.

We had a different experience to you as our DC was operated on at 2 weeks so now waiting for surgery. Our big shock was the difference between pre-surgery (24hr monitoring in PICU) to being sent home with no wires, no monitors and just some medication that we had to give her (oral syringe) three times a day. Only your doctors can tell you what its likely to be like once you are home from surgery. But in our case, coming home was wonderful.

So much easier @Mama8023 I can’t even describe it! Obviously it’s different for different children but my daughter: instant improvement in reflux - not completely gone but a million times better. She came home with the tube but we got rid of it less than two weeks later (3 weeks after surgery) and she never needed it again, not even with a really nasty winter virus a few months later. Losing the tube made improved the reflux further. We stopped the heart meds about 6 weeks after surgery iirc. Honestly it was like she was born on the surgery day (9 months in our case) and then everything got easier, she made so much progress towards milestones etc and family life got back to normal.

Hi All,
for those who’s babies went through surgery, did life get abit easier/ less stressful afterwards? Our little girl is 2 months old and will need surgery around 6 months. We’re finding it abit tough at the moment, the tube feeding, constant medication and reflux issues and hate seing her uncomfortable, so just wanted to know if it gets better?

Ah well done @Hoolahoophop that sounds amazing! Yeh I find I’m having to fight. We would be on just high calorie formula if I wasn’t expressing, but I really want to actually breastfeed. How is your little one now? Any tips for getting through the hard times? X

Hi @newmama86 congratulations on the birth of you baby. My DC has a different CHD that required surgery at 2 weeks. She was in NICU from birth and we were not able to establish breast feeding until about 8 weeks, so after recovery from surgery (and while still in hospital). During all that time I expressed. (I had so much 'spare' milk from all the time she was on IV fluids its unreal. I managed to donate a large amount of it to a charity that can use that milk for mostly prem babies) But we were able to get breast feeding going once she had recovered. I had to fight for it. The Doctors were keen to formular feed as she was struggling to latch for a while. Then she pulled her ng tube out, and I asked to try before they put it back in. She fed beautifully. So we believe that it was harder for her while the tube was in.

It was hard, but it was possible and you find strength you didn't know you had before.

Thanks @GertrudePerkinsPaperyThing this is really helpful and sounds exactly what the consultant has described for us! Did you find you wee in and out of hospital a lot in the early months? We don’t live close to family and have a 2yr old so already feeling abit of stain but just want baby girl to be okay! Reading online about avsd I see a lot of 20yr expectancy and doom and gloom but sounds like that isn’t necessarily the case?

Hi again OP

Congratulations on your baby.

Yes, I was able to bf following my baby’s first surgery.

So with DD, she was born quite small so had to have a “banding” operation at 8/9 weeks, which means putting a band on the artery (I think) which takes blood to the lungs so they didn’t get flooded. This meant she could basically keep going until they repaired the VSD at around 9 months. We had to wait that long so that her heart was big enough for the repair.

She also had a double outlet right ventricle which means both arteries on the same side, and the repair op was more complicated as they needed to repair the septum between the arteries.

I was exclusively bfing for about 5/6 weeks but then we had to go on to adding in high calorie formula. But she wouldn’t take a bottle. The only way to get it into her was to syringe it into her mouth which was horrible. They could have done a feeding tube if necessary but it didn’t quite get to that stage.

This carried on through the first surgery, and I was still mainly bfing for a while after that. Then finally we managed to find the only bottle she would take which we had to order from America! Obviously not even knowing if she would take that one.

By the time she was going on for 4 months she ended up going on to just the high calorie formula because the breast milk didn’t really satisfy her, but by that time we were advised we could give her solids. So she never had exclusively the high calorie stuff which gives them some quite crazy poos!

Both operations were a complete success.

As I said before, she is absolutely fine now. It’s not just a nearly normal life, she has a completely normal life! She’s been more affected by having asthma than by the heart problem since it was repaired.

She is honestly the most amazing 16 yo I could ever wish for.

It is incredibly hard at the time you are going through though. Please be very kind to yourself. Do make sure you take all the help you can get - a baby who needs to feed as often as our babies do is no picnic. Can your DH take any extended paternity leave? This very much needs two parents (at least) on deck.

Thanks very much!! ❤️ It’s been a little worrying so far with more time in hospital than we’ve had at home, but I think this is to be expected?

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.

Congratulations on baby’s arrival!

no advice - sorry - but congratulations!

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

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

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.

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.

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

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)

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

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 😂

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.