Heart condition in newborn baby

LVEyles · 2024-08-06T20:23:23+00:00

So I have a an 8 week old who at 1 week old was diagnosed with heart issues. He has 4 things wrong with his heart, the main problem being his aorta. He is under the Royal Brompton Hospital Anyone else experienced something with their own children or themselves and can give me some positive stories?

Schmetterling205 · 06/08/2024 21:40

Hello
I have been there, almost two years ago. The emotions are inexplicable to anyone who's not been through it.
My son was diagnosed at 8 days old with a CHD, then further tests showed there were two issues. He had surgery at 2 weeks old and is now considered 'corrected'.

It was a really tough time, but my word is he an unbelievable child. He is built like a tank, is the strongest toddler I've ever met, is hilarious, cheeky, clever and confident. I often think to myself, would I change what happened to him if I had the choice. I'm not sure I would. What if he wasn't the same amazing child he is now. What if what happened to him has created this fantastic personality and attitude to life.
The care my son received was world class. We cannot put into words how incredible all the staff who treated him were.
You will get through this, keep the faith. You'll be a different person when you get home but for the better. We don't sweat the small stuff anymore, we embrace every day and live for the moment. We are more positive for our children and enjoy the little things in life. It's like our son has taught us the true meaning of life!
You are welcome to message me any time. I'd also recommend joining the Tiny Tickers Facebook group, it's a great community.
Lots of love to you and your family
Sorry for the essay x

Lotsofhealthybutshitontop · 06/08/2024 21:45

my son was born without a valve and so wouldn’t have been able to breathe if they hadn’t caught it. Was only diagnosed after birth because he was being looked after for sepsis.

I cannot put into words how that time felt. It was the hardest thing I have ever dealt with and prob ever will. You have my warmest wishes and some cuddles thrown in too.

what I can tell you is he is a thriving 6 going on 7 year old. He’s had one surgery ( at a week old) and may require more in the future but those doctors are angels and the nurses who support them too so you are in safe hands.

just keep it simple. Try to look after you.
don’t forget you’ve had the pregnancy, the birth and now this. Take it one day at a time and know you are in the right place. It’s unbelievably difficult and I’m sorry this is your experience but it does get better xx

HappyHolidai · 06/08/2024 21:46

I was that baby 48 years ago. Had a couple of open heart surgeries and I do pretty well.

Schmetterling205 · 06/08/2024 21:48

Also, when I was in full panic mode I came across an Olympic Gold medal snowboarder called Shaun White on Instagram, who had heart surgery when he was younger. He's living an amazing life, dating a famous actress and got several gold medals under his belt doing an extreme sport. That always made me feel so much better to read about him for some reason!

BatshitCrazyWoman · 06/08/2024 21:49

My baby was diagnosed with an AVSD at a few days old. He had surgery when he was three weeks old, and is now a fit and well 32 year old.

It's a horrible time, my heart goes out to you

Lotsofhealthybutshitontop · 06/08/2024 21:50

And I second what the poster above put: we don’t sweat the small stuff!!

everyone always comments how relaxed I am as a mum and with the kids and basically it’s because that experience forged me. It’s also made me a nicer person and truly taught me the value of life. It doesn’t always work, sometimes I still get pissed off with work or family but sometimes I can catch myself and remind myself that ‘that stuff’ just isn’t important.

what I will add as well is that I went into some sort of trauma mode and didn’t process things at the time very well. At 12mths post partum I was still getting
flashbacks, so I engaged in counselling for PTSD, that was hard too, but boxed it all off. I read about PTSD growth the other day and realised I think I got that which has changed me in a positive way. So just mind how you go with it all and if you need to speak to someone do, you don’t have to be on your own xx

Schmetterling205 · 06/08/2024 21:50

Lotsofhealthybutshitontop · 06/08/2024 21:45

my son was born without a valve and so wouldn’t have been able to breathe if they hadn’t caught it. Was only diagnosed after birth because he was being looked after for sepsis.

I cannot put into words how that time felt. It was the hardest thing I have ever dealt with and prob ever will. You have my warmest wishes and some cuddles thrown in too.

what I can tell you is he is a thriving 6 going on 7 year old. He’s had one surgery ( at a week old) and may require more in the future but those doctors are angels and the nurses who support them too so you are in safe hands.

just keep it simple. Try to look after you.
don’t forget you’ve had the pregnancy, the birth and now this. Take it one day at a time and know you are in the right place. It’s unbelievably difficult and I’m sorry this is your experience but it does get better xx

We refer to the doctors, nurses and surgeons as angels too. They really are, it's the only word to describe them

BreakfastAtMilliways · 06/08/2024 21:57

My nephew was born with Hypoplastic Left Heart Syndrome, where the left side is underdeveloped and the plumbing is switched round the wrong way. Not that long ago this was invariably lethal, but he had regular operations to maximise his heart function throughout his childhood, until by the age of 17 it was struggling to function.

At this point fate intervened and he was able to have a heart transplant. He is now 30 and thriving. I’m acutely aware that it was only thanks to someone else’s awful bereavement that he was able to live his life.

DownRightAmazing · 06/08/2024 22:21

Hello, my daughter has a heart condition and was also under RBH. They are a fab hospital and know absolutely everything about the heart. My daughter needed open heart surgery which took place at 8 months old at RBH - we only needed to stay for a week. She is 8 years old now, still has annual check ups but completely healthy. Feel free to pm me (or ask on here) if you have any questions.

birchtree23 · 06/08/2024 22:32

Hi there. I'm 40 year old female and born with Fallots Tetralogy. Have lived a normal life and have a 5 year old daughter. The only medication I take is an aspirin a day. I'm also very active. Wish you all the best with your little one x

Original poster

LVEyles · 07/08/2024 00:50

Thank you to you all for sharing your stories.

I should of added my little boy is unable to have any surgery as there is nothing that will fix his aorta. His whole aorta is too small and it is just a waiting game to see if it grows with him.

The feelings and emotions I go through each day are indescribable. I never know if it will be my last cuddle.

I also had to have an emergency c section so still healing and recovering from the trauma caused there. I've never been through something so difficult in my life, all whilst trying to be a good mum to my 4 year old at the same time xx

OP posts:

DownRightAmazing · 07/08/2024 09:01

Oh @LVEyles that does make it harder - hope all these positive stories of surgery weren't too distressing for you.

When my daughter was born we knew about her heart condition (discovered in-utero) but we couldn't know exactly how it would present, whether she would get sicker quickly or ultimately when surgery would be - and I also had a 3 year old so I have a lot of sympathy.

I concentrated on keeping things as normal as possible for my 3 year old, he continued to attend nursery as he always had (which was mornings only) and I brought baby along to all his activities - babies are very portable, even sick ones. She quickly needed to be tube fed and I became an expert - tube feeding her whilst watching him at softplay, tube feed her sitting on the grass outside a theatre show we were about to attend, tube feed on the train. I didn't want him to resent her so I just got on with it.

I tried hard not to think too much of the future but I took a lot of photos of her, on her own, with her sibling and with both parents. I held and kissed her constantly - as I would have done with any baby but the unknown future was in my mind every time I gazed at her sleeping face or smiled at her beautiful eyes. It is so impossibly hard - but ultimately you just keep going and keep going.

How often are you being monitored? Does baby need any heart meds or similar atm?

Original poster

LVEyles · 07/08/2024 09:16

DownRightAmazing · 07/08/2024 09:01

Oh @LVEyles that does make it harder - hope all these positive stories of surgery weren't too distressing for you.

When my daughter was born we knew about her heart condition (discovered in-utero) but we couldn't know exactly how it would present, whether she would get sicker quickly or ultimately when surgery would be - and I also had a 3 year old so I have a lot of sympathy.

I concentrated on keeping things as normal as possible for my 3 year old, he continued to attend nursery as he always had (which was mornings only) and I brought baby along to all his activities - babies are very portable, even sick ones. She quickly needed to be tube fed and I became an expert - tube feeding her whilst watching him at softplay, tube feed her sitting on the grass outside a theatre show we were about to attend, tube feed on the train. I didn't want him to resent her so I just got on with it.

I tried hard not to think too much of the future but I took a lot of photos of her, on her own, with her sibling and with both parents. I held and kissed her constantly - as I would have done with any baby but the unknown future was in my mind every time I gazed at her sleeping face or smiled at her beautiful eyes. It is so impossibly hard - but ultimately you just keep going and keep going.

How often are you being monitored? Does baby need any heart meds or similar atm?

This is incredible! You super mum 🌟

That's what I need to keep remembering that although he has these heart conditions, he is portable.

Currently he isn't on any medication and was being monitored fortnightly until this week, the Brompton DR has advised he will next been seen in 12 weeks but we have open access to the children's ward at our local hospital should we need it.

It's lovely to hear about all the positive stories and how strong everyone has come out the end of it, including the parents.

Being a mum is never easy but add in complications and I feel like it is such an impossible task

OP posts:

DownRightAmazing · 07/08/2024 21:04

Sorry @LVEyles I read your reply this morning but haven't had a minute to myself - that's school hols for you 😅

Just wanted to say those regular visits to the RBH are so tough on you, it's no wonder you are struggling. It used to take me a day to recover from each one! Having less regular checkups really will make things easier.

Be really kind to yourself; I had a planned CS and that was hard enough on my body, an emergency one is even worse. We ate a lot of simple meals in those early months. Sort of semi-ready meals like those prepared half chickens in foil trays from Tesco - nothing wrong with an actual ready meal but your body needs nutrients atm and you probs don't want to feed them to your older child anyway.

Do get out and about, it makes things look brighter, but also a duvet day in front of CBeebies occasionally never hurt anyone!