Kids like heart transplant patient Grace are why “Team Wolfson” will take part in the Katie Ride, Walk and Fun Run 

 

Wolfson Children’s Hospital, Nemours Children’s Specialty Care, Jacksonville, and UF Health Jacksonville, are committed to organ donor awareness. Together the pediatric health care partners ride on “Team Wolfson; Cranking for Kids” at the annual Katie Ride, Walk & Fun Run. The event will be held this year on Saturday, April 18 in Fernandina Beach.

Children like heart transplant patient Grace Tobuck inspire “Team Wolfson,” comprised of physicians, employees, volunteers and their families.

Grace, now 4 years old, was diagnosed with a severe and rare heart defect by pediatric cardiologist Stephanie Lacey, DO, with the UF Health Pediatric Cardiovascular Center, before she was even born. When a routine ultrasound scan 20 weeks into mom Lindsay’s pregnancy revealed that she had hypoplastic left heart syndrome, a team of pediatric cardiovascular specialists, neonatologists, pediatric critical care specialists, critical care nurses and other members of the Wolfson Children’s Hospital team already were making plans to save the life of the baby the parents hadn’t even gotten to hold yet. 

When that day finally came on December 13, 2010, Lindsay was able to deliver naturally, and for a few moments, she and husband Kirk got to meet Grace before she was whisked away to Wolfson Children’s Hospital’s Newborn Intensive Care Unit (NICU). “I only got to hold her for about two minutes before they took her away,” said Lindsay, “but it was so amazing.”

Five days later, baby Grace underwent the first of three planned surgeries at Wolfson Children’s Hospital to begin the process of repairing her condition in which the structures of the left side of the heart are underdeveloped, making it necessary to reroute the blood so the single, right-sided pumping chamber can pump it to both the body and the lungs. All indications pointed to the surgery being successful and four weeks later with guarded optimism, the family was able to take her home with a feeding tube, machine to monitor the oxygen levels in her blood and home visits from a nurse twice a week.

But in late March 2011, a few weeks shy of her second procedure, Grace suffered a heart attack to her major pumping chamber that damaged her single ventricle beyond repair, and her pediatric cardiovascular surgeons agreed that her only chance at survival was finding a new heart for her. 

“In many of these cases, children with this condition will eventually need a heart transplant despite our best efforts to surgically reroute the blood to the single right-sided pumping chamber,” said Eric Ceithaml, MD, chief of Pediatric Cardiovascular Surgery at Wolfson Children’s Hospital and UF Health Jacksonville. “Often, the right-sided pumping chamber is ill-equipped to pump at high pressures for years and will often fail, but this failure usually is more gradual – not as acute as in Grace’s case.”

Grace immediately was added to the transplant waiting list for a new heart, and transferred to the UF Health Shands Transplant Center in Gainesville via the Wolfson Children’s Kids Kare Mobile Intensive Care Unit, which is staffed by a pediatric critical care nurse and a pediatric respiratory therapist and features advanced pediatric monitoring equipment that helps sustain patients during transports.

“Grace was in very critical condition the first month and we almost lost her a few times,” recalled Lindsay. “Around Mother’s Day they decided to perform the second of three repair surgeries just to keep her with us because her heart was so weak. We weren’t sure if she was even going to survive the stress of the surgery.”

But the corrective surgery bolstered her for a few more months, and on July 27 at eight months old, she underwent a heart transplant. Because of all the blood transfusions Grace had received in her short life, a mixture of antibodies had built up in her body and had to be eradicated so she wouldn’t reject the new organ. Her doctors treated her with medications to help build her immune system so her body could fight infection.

A month after transplant, Grace’s follow-up care at Wolfson Children’s included frequent visits to the UF Health Pediatric Cardiovascular Center at Wolfson Children’s Hospital, as well as outpatient physical and occupational therapy provided by Wolfson Children’s Rehabilitation Services. She suffered some developmental delays that kept her from eating or walking like children her age but as her health improved, so did her ability to move around and eventually, eat without a feeding tube.

Today, Grace is doing well although her parents know that the heart she received will not last her a lifetime, and she will need another transplant someday in the future. Still taking anti-rejection and six other medications daily, and undergoing annual biopsies to look for signs of disintegration in her heart muscle, her parents and medical team at Wolfson Children’s are working on keeping the one she has as healthy as possible for as long as they can.

Had it not been for the generous organ donation that benefited Grace, she would not have lived to see her first birthday – or any of the others. And one day in the future, she most likely will depend on someone else’s generosity again to save her life.

“We know this won’t be her forever heart, and we don’t know how long this one will last but we are doing everything we can to maintain it and keep Grace healthy,” said Lindsay. “You take every day as it comes, and cherish it to the fullest.”

In January 2015, Grace began nursery school twice a week and with much excitement, started ballet classes, putting her heart into every plié.

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

 

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