Malakai was born on September 24, 2008. We brought home a bouncing baby boy who passed all his newborn tests. But three weeks later, he started to develop jaundice of the skin and eyes. I called his pediatrician who recommeded I bring Malakai in that afternoon for a blood test. I knew at that point they were concerned because it was already 4:00 and she wanted me to bring him in that day. His bilirubin was elevated so we were told to come back in the morning for a repeat test and an appointment. They did more extensive blood tests the next day and sent us to our local Children's Hospital in Indianapolis.
After a long couple days of testing, we were told that, more than likely, our baby boy had Biliary Atresia. Biliary Atresia, or BA, is a rare liver disease that affects newborns. Without surgery, children born with BA would not live past the age of 2. With the surgery, called the Kasai Procedure, 50% of patients would need a liver transplant before age 5.
Malakai had the Kasai on November 6, 2008. We were thrilled to take him home only 5 days after. He progressed slowly, but we started to see the whites of his eyes come back. By January, his numbers were coming down and we thought his Kasai had worked. He spent a few days in the hospital mid-January.
Mid-February we were told at his scheduled clinic appointment that he wasn't gaining weight like they wanted and they were going to admit him for a few days and insert an NG tube to feed him. They asked if we wanted to stay that Friday or wait until the following Monday. We decided to wait. But he had other plans. That night, he started acting very lethargic so we decided to take him to the ER. He had a very low sodium and they admitted him to the Pediatric Intensive Care unit. We had no idea that we were going to spend the next 4 weeks in the hospital. From there it was a constant battle to keep his levels stable. He had severe ascites, which was fluid on his belly. He looked 9 months pregnant. They drained his stomach multiple times but just couldn't get him stablized enough to send him home. It looked like we were heading down the road where transplant was our next stop.
The doctors had told us about Children's Hospital in St. Louis. Unlike the hospital we were at, Children's Hospital did all three types of liver transplant. Whole liver, split liver and living donor transplant. We were going to go to Cincinnati for their liver program, but Michelle Nadler, nurse practioner for the transplant program at St. Louis called and said they could transfer Malakai to their hospital the next day. It was a whirlwind, but on St. Patricks Day 2009, we were introduced to the wonderful liver transplant team in St. Louis.
The first person we met there was Penny Scholl, transplant coordinator at Children's Hospital St. Louis. She was, and still is, someone we trust with Malakai and love dearly. I feel like I can call her anytime and ask her anything to do with transplant. If she doesn't have an awnser, she will get one for me. And no question is too silly for her. She understands the uncertainty that we have, as liver parents. The second person we met was Michelle Nadler. She has an incredible memory and can remember things about Malakai and his journey that I do not even remember.
Malakai was listed for liver transplant on March 20, 2009. My mother in law, Cindy, began the testing to become a live donor for Malakai. His first call came on April 24. We did not have peace about that liver, and after much discussion, we decided to decline that liver. The second call came on May 1. We packed everything and head to St. Louis. He was prepared for surgery and we were given an approximate time of 8:30 pm for the start. At around 8 pm, surgeon Dr. Chris Anderson came in and told us it wasn't going to work. The liver they had for Malakai just wouldn't work in his little body. We went to a hotel that night, disappointed and unsure about the future. Would another liver come in time? Should we have taken the first liver? We were second guessing everything. Cindy's tests came back that she would not be able to donate to him. We felt like time was running out.
We went back to St. Louis on May 6th for a clinic appointment and decided because he needed Albumin for three days thru an IV that we were going to move out to St. Louis. We rented a furnished apartment and my in-laws drove out with our then 2 year old daugher, Makena. The doctors told us then, Malakai needs a new liver. And he needs it soon. Within 2 weeks. It was so scary to hear those words from a team of doctors we trusted with his life. My identical twin sister called that day and asked what blood type Malakai was. She was currently 9 months pregnant and found out at her doctors appointment that our blood type was O+. I was certain that my blood type was A+ and since Malakai was O, I didn't think I could dontate. I was then rushed into testing to see if I was an acceptable donor. We were sceduled for me to give a portion of my liver to Malakai on May 18.
We went to the Botantical Gardens that Mother's Day, May 10th. He was a tiny 7 month old baby with a NG tube in his nose and barely weighed 10 pounds. I remember thinking as I pushed his stroller that it was Mothers Day and a mother out there was spending their last Mothers Day with their child. I knew that in order for Malakai to live, we needed an organ donor. Most likely a child.
We decided on the morning of May 12 that we were going to take the kids to the zoo. I was on the internet searching for the hours when my phone rang. Anyone waiting for a transplant knows, that when your phone rings, your heart skips a beat. "Unknown" came up on my caller ID and I just knew it was it. I awnsered and Penny Scholl said "Third times a charm" I know I probably stumbled all over myself. This was it! We took a short nap and packed up to head to the hospital, a whole 5 minute drive. We arrived around 1 pm and he was sent back to the OR that night. He recieved his Gift of Life in the early morning hours of May 13. I can't even begin to describe the emotions I felt that night. My dad had a double lung transplant in August 2003 and never woke up. I expected the same would be true for Malakai. I was completely terrified that he was going to die. We slept in the waiting room of Children's Hospital St. Louis. Every few hours the nurses would call and give us an update. I feared the worst everytime they called. I read a lot on line about liver transplants and some fellow liver moms sent me pictures of their kids shortly after transplant. It helped but all I wanted was for them to say he was done and SEE him again.
What seemed like an eternity later, out walks Dr. Jeffrey Lowell. I think I held my breath until he said "He's OK" I wanted to hug him. We were able to see him shortly after 7 am on May 13. He was taken off the vent as we were walking into his room. He was doing so well. He is such a fighter, always has been. I have a feeling he always will be. Dr. Lowell said he was the skinniest (if that's a word) baby he had ever transplanted. You could literally count every rib on his chest.
He spent about 3 weeks at Childrens, another week in St. Louis and we were able to head back home. It was a journey I will never, ever forget. I'm so thankful to every doctor, nurse and friend we made while at Children's Hospital St. Louis. They treat Malakai like he is a part of the family, not like he's a patient. I'm not sure where we would be without the team at Children's.
I'm also forever grateful to our precious donor, Sherae. We pray for her family every night and hope they know how special they are to us. We could never repay them for the gift they gave to our family. Malakai was given a second chance because they chose to Donate Life.
