SHEFFIELD, Ala. (AP) — Katie Mason talks about liver function, medications, surgeries and procedures better than any mother should. She does it, despite the pain, because she wants her son’s legacy to last much longer than the short seven months he spent on earth.
Bryson Walden was diagnosed with a rare liver disease, biliary atresia, in July, when he was just a month old. He died Dec. 30, just one day after the liver transplant Mason thought would save her baby boy.
“When they told me his liver was coming, I whispered to him that everything was going to be OK,” Mason said. “Sometimes, I feel like I lied to him.”
But Mason was just telling her son what she believed to be true after spending almost all of the previous six months in the hospital in Birmingham.
After a traumatic birth in her 36th week of pregnancy, Bryson stopped breathing and the medical problems began appearing. It was one thing after another for the first month of Bryson’s life, Mason said.
But she and Bryson’s dad, Chris Walden, thought everything was looking up when they were released from the hospital in Birmingham on July 3.
Mason and Walden have been together for five years.
Soon after settling into their home in Sheffield, they got the call that changed them as a young family.
One of the X-ray scans showed Bryson had biliary atresia, a life-threatening condition in infants in which the bile ducts inside or outside the liver do not have normal openings. With biliary atresia, bile becomes trapped, builds up, and damages the liver. The damage leads to scarring, loss of liver tissue, and cirrhosis. Cirrhosis is a chronic liver condition caused by scar tissue and cell damage that makes it hard for the liver to remove toxins from the blood. These toxins build up in the blood, and the liver slowly deteriorates and malfunctions.
The cause is unknown, and it isn’t genetic, but still Mason sometimes blamed herself for all Bryson was going through.
There are only two treatment options, a Kasai surgery that connects the intestines to the liver to create a channel for bile to flow through the digestive system, and a liver transplant. The Kasai procedure is just a placeholder until a liver transplant is done.
Bryson had the Kasai procedure July 1 and spent 25 days in the hospital in Birmingham. Just three days after coming home, Bryson had to be flown back to Children’s after a trip to the emergency room.
“He was swelling and puffy,” Mason said.
He had fluid and air building up in his stomach.
“My mommy intuition told me something was wrong, so we rushed him to the emergency room. When we got to Birmingham, they told me if we’d waited any longer, he wouldn’t have made it,” she said.
Bryson had emergency surgery to fix a small hole between his liver and intestine that formed after the Kasai surgery. Because of the hole, Bryson had sepsis.
The doctors did not give Bryson much hope. Mason and Walden were told to prepare for the worst.
“I had a true come-to-Jesus moment,” Mason said. “I just started praying. I couldn’t do anything but pray.”
Bryson surprised doctors, fighting hard to recover from all the trauma his tiny body had seen. He was placed on the children’s organ transplant list, and the waiting game started. He spent many nights in Birmingham, and when the family was home, they made many trips between Sheffield and Birmingham during the fall.
Mason was often alone in the hospital because Walden was still new at his job at North American Lighting and wasn’t able to be there all the time.
“Sometimes I was able to get off and go, but most of the time I was at home and they were at Birmingham,” he said. “I tried not to think about it all the time, but it gets to you.”
Walden was able to spend much of October and November with Bryson as he had a short break from the hospital.
Mason flipped through just a few of the seven photo albums full of Bryson’s pictures, recalling the good and bad moments that made up her son’s life. She did the math and said she took an average of eight pictures a day of Bryson.
She stopped at a picture of Bryson under the Christmas tree at the family’s house.
“I put the Christmas tree up Nov. 14,” she said. “Some people probably thought I was crazy, but I wanted him to see a Christmas tree and experience that. I packed a lot into those times when we were home.”
She stopped again at a picture of her holding Bryson near a Colbert County creek. The memories of her childhood spent playing in that creek are some of the best, and she was happy to get to take Bryson, even if it was just once.
Walden remembers the times when his son watched television with him or watched him play his favorite video games.
“He loved to watch TV,” he said with a smile, remembering the happy baby who also loved to smile and watch Elmo.
On Nov. 25, the family met with the transplant team in Birmingham and were told Bryson would stay in the hospital until a liver was found. The day Mason, Walden and the others praying for Bryson had waited for came on Dec. 29. After the eight-hour surgery, Bryson seemed to be doing well, but inside he was losing a lot of blood. On Dec. 30, doctors took him back to surgery to try to stop the bleeding, but Bryson died in surgery.
Mason is doing her best to turn her loss into a positive. She started a Facebook page when Bryson was sick and has kept it up in the months since to connect with mothers of other babies with biliary atresia and other illnesses.
She said it’s comforting to her to be a support for other moms to lean on.
She’s also raising awareness for the disease that “almost no one knows about.” She’s writing a letter to the American Academy of Pediatrics to petition for more aggressive newborn testing to find the liver disease earlier because there is a 60-day window that gives doctors the best chance of treating the disease.
“I know one letter might not make much of a difference, but I have to do what I can,” she said. “It’s for Bryson and all the other babies that are out there with this disease.”