Giving Hope


Deason

Deason is feeling much better these days, thanks to the staff at Children’s of Alabama’s Pediatric Transplant Center.

Children’s of Alabama’s Transplant Center is saving children’s lives.

Written By Paige Townley

Photography by Beau Gustafson

 

When Hannah Cornelius’ son, Deason, was born, the possibility of him ever needing an organ transplant never entered her mind. But when he began exhibiting symptoms of liver failure at the age of 3, it became a serious reality. “Deason was the healthiest, most energetic child, and then in the matter of one week, he was so very sick and in the hospital,” says Cornelius. “We went from just talking with Children’s of Alabama’s transplant coordinators about the potential of Deason being placed on the transplant list to him being moved to the pediatric intensive care unit and being listed No. 1 nationwide on the transplant list in just a few days.”

Thankfully, just over one week later, the transplant team at Children’s of Alabama found little Deason a new liver and successfully accomplished the transplantation. “That experience really helped open our eyes to just how important organ donation is,” Cornelius says. “We only had to wait for a short time, but it seemed like forever. We are so thankful to everyone at Children’s of Alabama for everything they did to help Deason.”

Every day, the doctors and staff at Children’s of Alabama’s Pediatric Transplant Center save the lives of children just like Deason. The Center opened in 2012 as part of the Benjamin Russell Hospital for Children and allowed for all of the hospital’s pediatric transplant services—which include heart, kidney, and liver—to be consolidated under one roof. Previously, children received pre- and post-transplant care at Children’s but had the actual transplantation performed at the University of Alabama at Birmingham (UAB). “Children’s administration and staff had an advantage of learning from those at UAB when planning for the Transplant Center, and they did an outstanding job,” says James Kirklin, MD, director of division of pediatric cardiac surgery at Children’s of Alabama. “That makes it easier for us as doctors and surgeons to take care of our patients and focus on providing the best care possible.”

Kirklin and the rest of the advanced heart failure and transplant team at Children’s perform approximately seven to 10 heart transplantations per year. Fourteen-year-old Tomias Jones became one of those patients when he began suffering from cardiomyopathy, a weakening of the heart muscle that occurs when it cannot pump like it should. “Tomias was tired and fatigued and had been sick for about a week with what we thought was just a virus,” explains his mother, Tynesha McCoy. “After another week passed, he started saying his chest hurt, so I took him to the doctor.”

Transplant docs

The transplant team, left to right: Carlton Young, MD; James K. Kirklin, MD; Devin Eckhoff, MD; F. Bennett Pearce, MD; and Stephen Gray, MD. Transplant physicians and surgeons not pictured: Waldemar F. Carlo, MD; Robert Dabal, MD; Daniel Feig, MD; and Janaina Nogueira, MD.

While initial opinion was that he had pneumonia, a chest x-ray showed there was more going on. Jones was eventually referred to Children’s and was placed on the heart transplant list in August 2014. By mid-November, an organ was found and Jones’ surgery was scheduled. “We believe in God and that everything happens for a reason, including this experience,” McCoy says. “The nurses, doctors, and everyone at Children’s have become like family to us. They made us feel so comfortable while we were in Birmingham. I couldn’t have asked more from them. We still have a long road to go, and I know they will be right there with us.”

Being with the families every step of the way is one of the most rewarding parts of the job for those at the Center. “Walking side by side with them and helping them through their child’s chronic illness and helping them achieve the optimal state of well-being is so humbling,” says Cindy Richards, RN, one of two kidney transplant coordinators. “I’m very blessed to have the job that I have and work with these families every day and hopefully make an impact on their lives for the better. I feel it’s more of a calling than a job.”

Like Richards, other staff members know full well the benefit the children receive, but they feel that they are the ones truly blessed. “I see so many children who are experiencing kidney failure and are on dialysis and because of that have had slowed growth with neurological and psychological development, and it’s tremendously rewarding to see these patients blossom and thrive after transplantation,” says Dr. Daniel Feig, director of pediatric nephrology, who helps manage 20 to 30 kidney transplants per year at the Center. “It’s why we all do it.”

Tyrin Koonce was born with postural urethral valves, extra flaps of tissue around his urethra that blocked the normal flow of urine, which damaged his right kidney enough that it had to be removed when he was just 2 years old. While he survived for many years with just one kidney, it eventually started to fail when he was 14.

Tyrin Koonce

One of those kidney patients is Tyrin Koonce. Koonce was born with postural urethral valves, extra flaps of tissue around his urethra that blocked the normal flow of urine, which damaged his right kidney enough that it had to be removed when he was just 2 years old. While he survived for many years with just one kidney, it eventually started to fail when he was 14. “When we went to the Center for our consultation we met everyone on the team to discuss everything,” says Tyrin’s mother, Lakesha Sims. “That hands-on approach made me feel so much more at ease so that when it came time for the actual transplant, we were ready and knew exactly what to expect. The journey was long, but they were there for us and went the extra mile. They became our second family.”

That feeling of family extends to the staff at the Transplant Center as well. As a transplant coordinator, probably one of the positions that has the most interaction with the families throughout their time at Children’s, Richards relishes the opportunity she has to get to know the families and watch the children grow and excel post-transplantation. “It’s always so nice to see them coming back and see that they’re meeting the milestones they should meet,” she says. “We’ll have kids that graduate out of our system and move on to adult care physicians, but they will come back periodically and it’s so nice to see them doing well and that they’ve gone on to college or have gotten a job and that they are healthy, productive adults. This is a great place to be a part of and I just feel very fortunate to be part of this team.”

One Response to “Giving Hope”

  1. Debbie Bowie says:

    Great article!

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