Heart Warrior Mum

[heartwarriormum]

Hi all.

I am a mum to a wonderful little boy who just turned 6.

At 5 days old he had his first open heart surgery for TGA, last year he had a second procedure for narrowing of the pulmonary artery from the 1st open.

All was well until this summer when we have started to notice he gets blue lips again when he exerts himself (crying, running etc).

His appointment at the hospital has been brought forward 4 months and he is about to have a fitness test, 24 hour monitor and scans.

I'm a member of a few groups on Facebook but a lot of the other people on there are in America so I was wondering if there was anyone more local in a similar situation who might want to chat?

I will always talk to and answer any questions from anyone!

Thanks for reading!

Heart warrior mum x

[Rg0717]

Hiya

I'm following as I'm trying to find the same.

I'm very new to all of this. My 19 day old son was diagnosed with Critical Aortic Stenosis at 4 days old. He had the balloon valvoplasty at 5 days old and we know he will need multiple heart surgeries in the future. We are back home with him now as he is an amazing superstar!

I'm absolutely terrified at the moment as the world of hearts is all so new to me. We were told to expect the worst when he was diagnosed and I can't seem to shake that feeling at all.

Hoping you get some good news at your next appointment

Xxxx

[Nanny72 in reply to Rg0717]

My granddaughter had a septostomy at 24 hours old. She was diagnosed with pulmonary stenosis, transposition of the great vessels and a VSD We were told she would get five years.

She had multiple surgeries as her left ventricle didn't grow. At thirteen she had a Fontan completion. Which basically means her left ventricle is bypassed because it wasn't working. So she now has a single ventricle.

To give you both hope. She is now 23. She still gets very tired but apart from daily Warfarin takes no medication regularly.

Little Hearts Matter is a brilliant support group, on line and on the end of the phone if you want to speak to them.

Heart children are very resilient.

School and college were not helpful but I believe it has got better.

There is very little support for adults congenital hearts. They are usuallyturned down for PIP. As happened to Freya.

The support for them up to 16 is brilliant.

Your children will grow and thrive. Treatment and surgery has improved dramatically.

[heartwarriormum in reply to Nanny72]

Thank you Nanny72 I will look at Little Hearts Matter - I hadn’t heard of them before x

[Nanny72]

I have replied to Rg0717 I think my reply answers your questions too.

Little Hearts Matter is the website of the group which can answer many of your concerns

[heartwarriormum]

Sorry to hear about your little boy. It is the most horrendous time with so much to o process, take in and all the emotions that go with it!

I’m glad to hear you are home but that feeling will take a while to shake unfortunately!

I’m not going to lie, it isn’t easy but please definitely take any help and support offered!

We didn’t get much but other people where offered lots and I can see how it helped them!

There’s also Facebook groups I have found recently that do help.

Always here for a chat x