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

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?

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 @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 @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.

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 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?

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 @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.

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

@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

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

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