Maya, mom to Ila, transplant patient
"To see a tiny baby’s body struggle to survive is heart wrenching, let alone your own. Intravenous needles on both arms and legs, multiple blood draws, regular monitoring, medicines day in and day out, and the constant company of helplessness. I struggled to keep my composure."
"When a terrified baby cries, it is nothing like the sweet cry that we normally associate with a baby. There is a certain urgency in the voice and pitch, a wailing such as an injured animal. It grabs you by the heart and yanks. I held her closer and loved her more, but needles kept coming. She was headed for transplant."
"Dr. Morio Kasai, a well-respected Japanese pediatric surgeon, developed a technique called the Kasai procedure, also known as hepatoportojejunostomy. It is a revolutionary surgery that gives infants with biliary atresia the luxury of time. Time needed to gain weight. The technique involves sculpting bile ducts from the child’s own intestine and allowing for the corrosive bile to make its way to the intestine. Bile is an essential acid required for digestion of fat. Since there was no way for the bile to reach the intestine, there was no way for her to gain weight. The Kasai procedure was performed on her when she was 10 weeks old. I have thought of Dr. Kasai every now and then since that time. One man in the 1950s—when nobody gave a second thought about liver kids—took up their cause and gave them a chance at life where there would have been none. He passed away on December 8, 2008, two days before my girl had her transplant."
"The Kasai was a success. She was fast asleep in the NICU when I went to see her after surgery. My baby, my beautiful little girl, had been cut (and sewed) in half. A thick angry scar ran across her tummy. I wept for her. Children suffer in grace, they carry their scars with dignity and without the extra drama that an adult is capable of. She was the model patient, the relief she felt from the temporary drainage of bile was obvious. She even began to gain weight almost immediately. We switched her to a new kind of milk, a formula milk made entirely of completely broken-down amino acids. It worked like magic."
"The third floor of Packard Children’s is wonderful. Only angels are allowed to work there. Even as I fretted and fussed over her recovery, they quietly came in and out of the room making sure to keep an eye on her every breath and heartbeat."