There’s only one answer to that question: you do it because you must. Nobody wants to kiss their child’s head and watch them fall under sedation. Nobody wants to leave the OR wondering whether they’ll ever see their child alive again. I’ve done it four times with Corey. I hope I never have to do it again.

Corey had the B-T shunt surgery as an emergency on March 9, 2005. He was barely two weeks old. Just a little tiny baby. And he seemed fine. But the home pulse oximeter told a different tale. Corey’s oxygen saturation levels were in the toilet. We checked him in through the ER at Johns Hopkins, and he had his first surgery.

We were a terrified sobbing disastrous mess before the surgery. I bit all my fingernails off during the surgery. And then Corey showed us what a little spitfire he is. He fought his way through the surgery with no complications. Corey came home on March 15, 2005 after a short textbook recovery. He was one tiny being with so much strength and personality. He still is.