Today, a friend posted an article on FB about HLHS and the research that took place at the Children's Hospital of Philadelphia (CHOP). Several of the doctors mentioned throughout the article, were doctors who were assigned to Wyatt's case when we arrived at CHOP. Many of the doctors who were mentioned, we met face to face with several times. All were excellent doctors.
The title of the article is "In a Challenging Infant Heart Defect, Two Thirds May Have High Chance of Survival". Arrrrrrrrrrrr. Slam the breaks on. Crash. Boom. Bang.
You have just experienced what it feels like to hit the bottom, were you only receive bad news, every single time another doctor comes into the room, it's more bad news. First, you hear about all the research being done, the numbers, and the success stories. Then you are forced to slam the damn breaks on while you are told that YOUR CASE DOESN'T COMPARE TO THOSE. Your case is worst case and will never be compared to those.
All of the research, studies, statistics, nothing matters in our case. Worst case scenario, it was called. The doctors were great. They were open, honest, sorry for the situation, and explained it well for two parents who had never heard of HLHS before. Each doctor added their own spin on things, but it all resulted in bad news. Each doctor was hopeful, but inside they knew it was the worst case scenario and nothing was going to work.
Here is a snippet of an article from Prenatal Pediatrics:
How common is HLHS and what causes it?
HLHS is one of the most common serious heart defects in newborn babies, seen in 1-4 out of every 10,000 live births. It is believed to make up 9% of all cases of heart defects present at birth, and is twice as common in boys as girls. No one knows for sure what causes HLHS, but it likely happens very early in pregnancy when the heart is developing, around 5-8 weeks of embryonic life.
Nine percent, pretty low number huh? That's what I thought, until I was unlucky enough to have a baby fall into the that 9%.
Another snippet from the same article:
What are the chances I could have another baby with HLHS?
In most cases, HLHS occurs due to chance alone, so the chances for a second affected pregnancy are generally only 2-3%, though some studies suggest a higher chance of up to 13.5%.
Two to three percent, low right? Even thirteen and a half is still low. But not to me.
Look at the numbers, look at the chance. Wyatt fell into the low numbers. Wyatt could never catch a break, he was always in the lower, greater risk, not likely for survival numbers. Even in the article that was posted today, Wyatt was part of the low number, part of the one third of fetuses that were considered high risk, the 32%.
How can one egg become so lucky during the IVF process to develop into our ONLY embryo. But then become so unlucky that it turned into that 1 in 100,000 babies to get HLHS and still be one of the babies to fall into the one third of fetuses in the high risk category with HLHS, and then lose the battle.
It just isn't fair, but that is life right? Not fair.