I don’t know alot about heart abnormalities, really.
I only know that aortic valve stenosis was one of the reasons my son died.
I know that AS comes as mild, moderate, severe and critical and that Will’s was critical.
I know that AS means that a usually tricuspid valve can be bicuspid and that the three leaves (or two) can be fused together, leaving nothing but a tiny ‘straw’ hole (sometimes shaped as a teardrop) for all of the oxygenated blood to pass through.
That’s alot of blood through a tiny hole.
I know that it increases blood pressure, lung pressure and causes the heart to become enlarged and organs to fail.
When it is critical the chances of survival are not great.
A balloonectomy is often the first procedure that is attempted, after that it is open heart surgery.
I know it is familial.
My father in law, although he didn’t know it until he was in his forties, had mild aortic stenosis. He was always a skinny kid, who seemed to be out of puff alot. As an adult it presented as a heart attack. That’s how they found his abnormality. That is the most common way for a mild stenosis to present.
He has had two valve replacements since, one was a pig’s valve, the other is synthetic.
William would have needed valve replacement as he grew, when he was a toddler, when he was a child, when he was a teenager and when he was an adult because the valve doesn’t grow with the body.
Like clothes, his valve would be too small for him, one day and he would need to move to the next size up.
I know that nobody knew about my baby’s stenosis until his patent ductis closed over and he crashed.
Badly.
What is amazing to me is that Will fought hard while his body was maintained on his foetal circulation.
When a babe is born and takes that first breath, it starts a chemical and physical reaction which ‘switches off’ the circulation that has been theirs for the last forty weeks and their body takes independent control.
It really is an amazing thing,
when it works the way it should.
That’s why his abnormality was missed – because foetal circulation is such, that a minimal amount of blood needs to circulate through the aortic valve.
It was virtually invisible
until he was born and tried to live on his own.
William’s aortic stenosis would have changed his life, had he made it through those first few days.
I know he would have lived in a world of hospitalisation and medication and there would be other limitations as well.
Operations and risks and worry.
I know that there would be times when he felt so different from his sisters and schooling and sports and all the rest of the day to day things, that make a child’s life full and interesting, would have to be well thought out and tentative, if taken on at all.
I know that life would be different.
I don’t know alot about heart abnormalities
but I do know that discovering your baby has one is life changing, no matter the outcome.
Also blogging at Three Ring Circus