Another "my child" one.
DS was a seemingly healthy pregnancy.
Labour at 35 weeks, EMCS and he was born blue. Managed to get him onto a ventilator.
Diagnosed with Congenital Diaphragmatic Hernia, missed at every scan. Instead of his liver or intestines going up into the hole, we think the liver actually blocked the hole, enabling his lung to grow fully. Normally with such a huge diaphragmatic hernia he'd have had a severely impacted lung. He couldn't be operated on until day 13 and literally the first words from our surgeons mouth was "was that was harder than I expected!"
Did genetic testing and he has a mosaic trisomy. If he'd had the full trisomy, combined with the CDH, I doubt we'd have him.
If they'd diagnosed the condition pre birth and had pushed us for genetic testing (it is a condition liked to a trisomy) they may have not been so willing to treat and operate in him.
In the process of operating, his superior vena cava was damaged and basically is totally occluded due to scar tissue. His body MADE ITS OWN COLLATERAL VEINS when he was outside of my body so his heart could still function. His heart looks like a can of spaghetti apparently there's so many extra veins.
He required more surgery in his bowel at 1 and I repeatedly signed off permission for a stoma, which we avoided at every op.
And on top of it all, he's a boy and boys have lower survival rates anyway.
He is in mainstream school, being average. No long term learning disability which we were told was a, certainty. Likely some neurodevelopmental stuff and there'd some long term physical stuff going on but if yo u did the odds of him being alive as a lottery win, we'd be frigging millionaires.