a link

I'll post more later why this story is important to me.

OK, it's later so here I go. Read the story at the above link, then come back to this - or it loses a major element of something.

When my daughter Alexis was 36 hours old, we learned that she had a congenital heart defect. She was what used to be called 'a blue baby' meaning that her heart was unable, due to some defect, to circulate oxygen throughout her body. They're called (or used to be) 'blue babies' because the lack of oxygen causes their fingers, toes and lips to be blue tinged.

She was transferred to another hospital with a neonatal intensive care nursery, and a children's hospital. One of the best children's hospitals in our area. Over the next few days we were given best case, and worst case, scenarios, we were told to wait for test results and for the team of doctors to asess her case. After 2 days, we were told she was a worst case scenario. She had 3 separate defects. The 2 most serious being Pulmonary Atresia and Tetralogy of fallot plus venticular Septal Defects (VSD). Each of those is linked for those of you who want to really understand the details, but in short, basically no part of her heart was working correctly. She was born with a chest full of hamburger meat, which during gestation her body had tried to overcome by creating other vessels from her aorta, and keeping her ductus open after birth as well. She was amazingly healthy for a child who was so sick. The worst ailment she showed outwardly during her 12 days was the horrible diaper rash caused by her body's inability to circulate leukocytes to the area to combat the irritation caused by the diaper and its contents.

Now, when she was 5 days old, we were told she'd need major open heart surgery, and a pulmonary transplant - they were going to give her a whole new pulmonary artery, close off the extra vessels, and close one of the septal defects. They told me she would of course be in danger from any number of complications, but with her relative good health her chances were good. (80 - 90% was what they told me) but it's a damn hard thing to face, knowing that they'll be inducing a coma that may last weeks, cracking open her breast bone, adding and subtracting parts of her heart, and all the while she'll be on a circulatory machine - she'll be dead, a machine will circulate her blood and hopefully avoid brain damage, but, no guarantees.

I had to think to myself at the time, how much she'd be enduring, what her risks were what her chances were, all the possible complications - and her long term prognosis, like the repeated heart surgeries just like this that she'd have to undergo throughout her life. Meanwhile, she was pink and smiley and happy and growing... which is unusual for a child in her condition.

So I asked them, what if we decide not to have the surgery, what are her chances then, what would happen?

I was told that there would be a court order, forcing us to consent, or she'd be taken from us, and the surgery would proceed. We had no choice. I knew I may be looking at the idea that I might only have her a few days at all, she was facing death, either way. So knowing she may only live a few days, I was left to lose her to the courts, lose her to death, or both. If she was going to have the surgery anyway, I may as well consent, and still have the right to see her while she was hospitalized, and assuming she survived, I could take her home.

I signed the papers.

On her 12th day she went to the OR. She spent 10 hours there, laid open like a side of beef, being butchered.

She went in happy and outwardly healthy, doing amazingly well. She came out purple and bloated and comatose. Five hours later she died. It had all been pointless, she suffered, and I couldn't stop it because Department of Social Services said so.

I'll live the rest of my life not knowing how much more time I might have had with her if the government hadn't stolen my right to have it.