Anyone with babies with cardiac issues? Let’s chat!

[Tiredmam1]

My son is 5 months, he’s beautiful and pleasant. He sleeps so well, he’s smiley and wonderful, and brings joy to everyone.
He suffers with SVT which was found about 2 hours before his very quick emergency section birth at 36 weeks. We then spent 3 weeks and 4 days over 3 hospitals in various departments. We now have fortnightly visits to check his progress, and he’s on various meds 7 times a day. He’s 5 months and responding really well to his meds and treatment, but he was about 12 hours away from dying.
I was wondering if there is anyone else out there with children with heart issues? I’d love to chat, there isn’t anyone near me who I can talk with about their experiences.

Not quite the same situation but my DS has cardiac surgery at 3 and 4 weeks old due to endocarditis that grew on his Mitral valve. The first surgery was to buy a bit of time, remove the clump of infection and repair the valve posterior leaflet. The second surgery a week later was to re repair the repair as it broke. He was in ICU for 3 weeks and a children's high dependency cardiac ward for a further 4 weeks.
He's not on any medication now but had 3 cardiac appointments last year and they're really pleased with how he's doing so he won't be seen again until later this year.

Tiredmam - just sending you support and . My child had cardiac issues as a baby but has thankfully now recovered. I spent her first month in hospital, part of which on life support, and had so so so many appointments and medicines over the first few years. I hated hospital stays, and I hated appointments! They were a full time job.
Have they said what the prognosis is? What do they expect will happen over the next few years?
Do you have other children or is this your first?
The thing I’ve always hated about heart issues is that they aren’t visible - so scary for the parents not really knowing what is going on inside on a day to day basis.

My dd has a few cardiac problems. She had no femoral pulses at the newborn check so was kept in icu then sent to a national children’s hospital where they discovered a blockage in her aorta ( she also has a murmur and a bicuspid leaf valve) . She will probably need surgery on her aorta in the future but as long away as possible hopefully. We have very regular echoes and ecgs to keep an eye on the blockage.

Hi guys!!
It’s great to hear your little ones are doing so well now, and I hope you have recovered from the experience!
He is my first, my one and only 😂 his prognosis is positive, it will end in one of two ways, surgery or he will fix himself, although it is looking like surgery at the moment.
It honestly feels like we live at the hospitals, im on first name basis with the cardiac ward nurses and I know their coffee orders. It really is a full time job, and it was completely unexpected. It’s an upward battle, but little by little we are getting there, I’m so lucky.
I agree that’s the worst bit about these conditions, because they aren’t visible people don’t take them as seriously. I once had a woman in Costa tell me off for giving my son “Calpol”, which was actually his medication to stop his heart rate hitting 200bpm (which is his resting heart rate). It’s very lucky I’m quite a confident, and very politely told her what it was, what it did, and to focus on her coffee not what I was doing with my son

It's exhausting it's it?
DS was a complicated case of urosepsis caused by undiagnosed posterior urethral valves. He had meningitis, a stroke, endocarditis, 2 x OHS and chylothorax from the second surgery. Drs didn't think he'd survive.
We hope that his repair will grow with him and he won't need a valve replacement but only time will tell.

That sounds complicated and ridiculously scary, I hope it will grow with him too. It’s mad to think how much they have gone through at such a young age.
We named my son after superman, before we even knew about his condition, it’s a very appropriate name. These kids are fighters, amazingly strong. I have no doubt when they get to school they’ll enjoy telling their class mates about this, even though they have no recollection of it 😂
SVT is normally a very simple thing to treat, but my son was determined to make it as difficult as possible for the amazing Doctors and nurses that treated him, and I have no doubt he’ll enjoy telling people that too 😂

Oh totally - my dd is fearless - such a little fighter and has such spirit. People look at her medical history and then her running about and can’t believe it’s the same child.
Having a baby is hard. Having a sick child extra hard. You’re a tough mummy too not just your little lad who is strong!

To look on the bright side, I’m ever so glad this has happened on my first. It meant we could stay with him, even when they sent him a long way away. I don’t know how people manage when they have one in high level care, and one depending on them outside, it’s incredible.
My boy is my one and only, I think this just confirms that fact. I know no different, I think having another now may be a bit dull even? What will I do with a normal maternity leave?
We are all strong parents, we survived an incredibly difficult situation and come out the other end, we should be so proud ❤️

Couldn't agree more @Tiredmam1 and @Redskyandrainbows67

We may have been battered and bruised but we've come out the other side. I am forever grateful that my DS won't have any recollection of what he went through. It was tough to watch and is etched in my memory forever. Morphine and midazolam made short work of making sure that DS wouldn't feel and know what was going on. He's almost 15 months old and is the happiest sausage.

Hello!
I’m a cardiac mummy too I guess. My little boy has Wolff Parkinson white which was diagnosed when he was 6 months old when he went into SVT so I know how scary it is @Tiredmam1
He’s on flecainide and atenolol and we have had a few episodes of scary heart rate situations but he’s been stable for a wee while now so we are very thankful for that. He’s under GOSH and will have an ablation we hope at the end of this year or next depending on weight which we hope will cure him.
But it is tough. And I don’t know what it’s like to be normal and not fearful when your child spikes a temperature, to not rush to the hospital in the middle of the night when they are breathing rapidly, to not worry constantly when they’re at nursery or somewhere where people don’t know exactly what to do. And he’s our eldest. Our poor little girl who came along 8 months ago has been just as over protected as we just don’t know how else to be
Thankfully we have a very understanding paediatric team at our local hospital