Southside boy born with hypoplastic left heart syndrome doing well one year after transplant, receiving follow-up care at Wolfson Children's 

 

Baptist Health, Wolfson Children’s Hospital, Nemours Children’s Specialty Care, Jacksonville, and UF Health Jacksonville, are committed to organ donation awareness. On April 16, 2016, the four organizations will unite on “Team Wolfson: Cranking for Kids” at the annual Katie Ride, Walk & Fun Run in Amelia Island.

Children like heart transplant recipient and Wolfson Children’s Hospital patient Oliver Keene inspire “Team Wolfson,” comprised of physicians, employees, volunteers and their families.

Even before he was born, Oliver’s mother Venita Keene already knew something was wrong with his heart. She was only halfway through her pregnancy at 20 weeks when a routine ultrasound revealed that he would be born with hypoplastic left heart syndrome, a severe defect in which the structures of the left side of the heart are underdeveloped, making it necessary to reroute blood flow so the single, right-sided pumping chamber can pump it to both the body and the lungs.

“Hearing this news was devastating,” said Keene. “We didn’t know much about it other than it would require three open-heart surgeries, and after that we didn’t know how long his life would be.”

Oliver was born on June 17, 2014, and taken directly to the Newborn Intensive Care Unit at Wolfson Children’s Hospital, where he stayed for six days until he underwent surgery. Michael Shillingford, MD, pediatric cardiothoracic surgeon with the UF Health Pediatric Cardiovascular Center affiliated with Wolfson Children’s, performed the first of the three procedures called the Norwood, inserting a shunt to reroute unoxygenated blood through the lungs, and enlarging the aorta with the implantation of a patch to improve blood blow to the body.  Initially, the surgery was a success, and Oliver spent six weeks in the Cardiovascular ICU recuperating.

“Unfortunately, in Oliver’s case, he had a leaky tricuspid valve as part of his heart defect,” said Robert English, MD, pediatric cardiologist with the UF Health Pediatric Cardiovascular Center. “In people with normal hearts, a leaky tricuspid valve isn’t a big deal, but in hypoplastic left heart syndrome, it is one of the most important valves. As the valve between the upper and lower chambers on the right side of the heart, it keeps the blood from leaking backwards from the lungs. Over time, this leaking can cause problem by preventing blood flow through the lungs.”

After Dr. English performed an investigative heart catheterization, the decision was collectively made by the Wolfson Children’s and UF pediatric cardiovascular team that Oliver’s best chance at survival would be a heart transplant. He was assessed by the transplant team at UF Health in Gainesville, and officially put on the waiting list in October 2014.

“Around Christmas, he was gradually getting worse, turning blue and having a lot of trouble breathing. It was heartbreaking to watch him go through that,” said Keene. “But a few weeks later we got the call, and he got his new heart on January 6, 2015.”

Oliver stayed in the hospital in Gainesville for a few more months as he continued get stronger, dealing with a few complications related to his feeding tube, but got to go home in March 2015. He’s received care at Wolfson Children’s Rehabilitation for physical and speech therapies to help improve his walking and eating, and continues follow-up care at the UF Health Pediatric Cardiovascular Center at Wolfson Children’s. He is doing so well, his parents took him on his very first trip to Disney World this spring break. Oliver will need another heart transplant down the road (hearts typically last about 20 years), but for now, his quality of life is much better.

At the beginning of her pregnancy, Keene and husband, Johnny, had decided to name their baby Oliver after the comic superhero The Green Arrow – otherwise known as Oliver Queen. As it turned out, their son lived up to the name, and more. During his stay in the hospital, Keene said, the family had green shirts made sporting a heart with an arrow through it on the front, and a saying on the back: “Sometimes, real superheroes live in the hearts of small children fighting big battles.”

Thanks to the gift made by a donor family, Oliver has a strong one.

“We are thankful for organ donation because it gave Oliver a second chance at life,” Keene added. “We think of his donor family every day, and are so grateful for their decision to donate. It’s a gift our family with cherish forever.”


For information about organ donation and how to become a donor, visit donatelifeflorida.org.

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