Tetraolgy of the Fallot

[skybie]

hi all, bimby has just been diagnosed with this, just wondering if anyone elses baby has had it and can shed some light on their experiences for me.
Thanks so much

[UntoldAngel]

Haven't heard of it, but hope everything is okay
Is it a curable or treatable condition?

[Olive]

darl, i dont but just looked it up, i hope someone can help you.
would you like this moved to the childrens medical area?

[skybie]

Yes please Olive, wasnt sure where to put it.
Its treatable with surgery, just wanting to hear about other ppls experiences with it, bit scared atm

[UntoldAngel]

oh hun I just looked it up... massive hugs to you and your family... it must be scary
Hope someone can give you their experience with it

[skybie]

Thanks untold angel. have been in contact with heart kids, theyre wonderfully gentle and kind. organsing some councilling for us and for DD1 so she understands why her baby brother has to go back to hospital for a while

[MistyFying]

Hi Skybie

My son had congentital heart defects when he was born. He didn't have Tetraolgy of the Fallot, but he did have two of the four issues associated with the condition - pulmonary stenosis and ventricular septum defects. He also had atrioventricular septum defects .

He had two lots of surgery. The first one he was three days old and they did closed heart surgery to repair the stenosis and insert a band. The second surgery they did when he was three months old was to repair the holes and that was open heart surgery involving bypass.

He had to stay in hospital from the time he was born until his recovery from the second surgery.

Often cardiac babies aren't able to suck (the holes in the heart impact the respiratory system) and are fed in the first instance via a nasal gastric tube, hence you may want to source a good expressing machine before he arrives.

And sometimes circulation is an issue and babies find it hard to warm up their extremities - so if you know anyone who knits ask them to make some warm booties, beanies and gloves.

Hope that's helpful Skybie - all the best.

[~clover~]

Hey. Can't believe I didn't see this earlier!
We have heart issues in the family, but nothing like this. Was scary enough finding out DD2 had a murmer.
Just sending you love & hugs. Will be right here to support you through this hun x

[Visitor6]

hi all, bimby has just been diagnosed with this, just wondering if anyone elses baby has had it and can shed some light on their experiences for me.
Thanks so much

Tetralogy of Fallot or Fallot's Tetralogy has such a fantastic success rate now days with full reversal surgery since the 80's.

Can I suggest these guys as an information and support team> Heart Kids Victoria is part of a national organisation for heart disease in children. I think they might be the right sort of parents to talk to. HeartKids Victoria

[blessedatlast]

Hi I have just seen this post.. I have an extremely complex congenital Heart condition that is often shortened to TOF .. Pm me please if you would like to know more. Way too much to post here..

[krystals]

Skybie, my SIL has it- pm me if you want her story, she's 32 now and just had her 3rd op. First was at 8 weeks, then 8 months...then at, well 32. She has just received a new valve and all is terrific. Even with the condition she is an outdoor sports queen, a great surfer, rock climber and runner.
But yeah, pm me if you want the full story.