I have been reading a great preemie book (thanks Julz if you're reading this!) and I am finding it really helpful. Any time I start looking at stuff on the Internet I am so overwhelmed and don't know what is worst case scenario versus the likely scenario. Reading this book has also brought to light some interesting stats about Asher's bleed which I thought I would point out. But first, let me start from the beginning and explain why I think we have spent the past year of hell beating the odds. Hopefully I don't lose you with the math.
It all began with our loss last year. The likelihood of two healthy parents with no kidney problems producing a baby with no kidneys is 1 in 5000. The likelihood of having a baby girl with no kidneys is roughly 1 in 35,000. Whoa. We should have bought a lottery ticket right there.
Then there's twins. Not saying that wasn't happy news, but it's pretty crazy news. 1 in 30 pregnancies is twins. Not really that astounding because a lot of those are with the help of fertility. But 1 in 250 pregnancies is identical twins which are usually just completely random freaks of nature (sorry boys, but you really are little freaks aren't you?)
So now we have Asher and his bleed. Pretty much all babies who suffer the severe blood pressure and pH issues Asher had at birth have bleeds, so we couldn't really escape that one. But only 10% of babies born at their gestation have Grade 4 (the worst) bleeds. We just had to squeak into that 10% because clearly, we have a bad history of falling into the tiny categories that almost all other babies do not fall into.
But now here's the good news. Of those babies that have Grade 4 bleeds, 50% of them die. Asher did not. Of those that survive, 85-100% develop hydrocephalus (fluid on the brain). Again, somehow, Asher did not.
So maybe the odds are changing in our favour?! I have repeatedly asked myself why, when I never have any luck with lotteries, raffles, 50/50s or any good gambling, I have all the "luck" when it comes to the problems that can arise in childbearing. I truly think that was all practice to get us used to beating the odds now that Asher's health and quality of life lie in the balance.
As for his long term prognosis, 25% of the surviving babies with Grade 4 bleeds walk away with no complications. None. Why can't that be him? Why won't that be him? It can, and it should. And even of the remaining 75% with complications - some of those must be minor right? So if not no complications, then minor. It has to be that way.