Boy Born With a Deadly Heart Disease Finds Life-Saving Care at UCSF

Sean White Receives UCSF Gen. Colin Powell Medal of Courage


As 13-year-old Sean White stood on stage to receive a medal of courage from Gen. Colin Powell, the image of the healthy, active boy belied the challenges he overcame to earn the amazing honor.

Sean was born with Shone’s Complex, a congenital heart disease that’s often fatal for infants, and underwent three life-saving heart surgeries within the first three years of his life. Not only has he survived the ordeal and other complications, Sean is now an athlete in baseball, soccer and basketball.

Sean White, 13, receives the “UCSF Gen. Colin Powell Medal of Courage” from Gen.

Sean White, 13, receives the “UCSF Gen. Colin Powell Medal of Courage” from Powell at the Sept. 20 Dreamforce Concert to benefit the UCSF Benioff Children’s Hospital. His mother, San Francisco Fire Chief Joanne Hayes-White, far left, and UCSF Medical Center CEO Mark Laret, far right, look on.

Grammy-winning country pop group Lady Antebellum visited patients at the UCSF Benioff Children’s Hospital on Sept. 20 just before headlining the Dreamforce benefit concert that raised $4.3 million for the new children’s hospital facility at Mission Bay.

Powell, former US Secretary of State and chairman of the Joint Chiefs of Staff, honored Sean with a special “UCSF Gen. Colin Powell Medal of Courage” on Sept. 20 during a benefit concert for the UCSF Benioff Children’s Hospital at the Bill Graham Civic Auditorium in San Francisco. The event, hosted by Salesforce.com as part of its Dreamforce conference, raised $4.3 million for the completion of the new UCSF Benioff Children’s Hospital, which is scheduled to open at Mission Bay in February 2015.

Sean’s journey to sharing the stage with a four-star general was a long one.

Shone’s Complex causes obstructions to the left side of the heart — both the inflow of the heart coming from the atrium to the ventricle, and the outflow of the heart from the ventricle out to the aorta and around the aorta.

“It depends on how severe the obstruction is,” said David Teitel, MD, medical director of the Pediatric Heart Center at the UCSF Benioff Children’s Hospital. “But most children with Shone’s Complex have critical obstruction as infants and wouldn’t survive without an intervention in the first year of life.”

Spending His Childhood in Hospitals

Sean’s mother did not notice anything unusual during her pregnancy with the youngest of her three sons.

“But shortly after Sean was born, I noticed that he wasn’t thriving," said Sean’s mom, Joanne Hayes-White, who is also chief of the San Francisco Fire Department. “His birth weight was nearly 10 pounds, but unlike the other two, he was not nursing. He also was kind of lethargic, sleepy and his respiration seemed to be labored at times for the first week to ten days.”

At first Sean’s doctors at a private hospital couldn’t figure out what was going on with him, initially thinking he had meningitis. A chest X-ray revealed he had an enlarged heart. Sean needed open-heart surgery to fix the narrowing of the aortic arch (coarctation of the aorta) which causes the left ventricle to work harder to compensate for the limited blood flow.

That operation didn’t fix the problem, and his family brought him to UCSF.

“The coarctation repair needed to be re-repaired,” Hayes-White said. “It wasn’t as good as they wanted it to be at UCSF.”

Sean White shortly after his open heart surgery to fix a congenital heart defect

Sean White shortly after his open heart surgery to fix a congenital heart defect when he was a year old.

Initially doctors attempted a minimally invasive approach in the cath lab by inserting a microscopic wire through the femoral artery near the groin. Sean then underwent another open-heart surgery in August 2000 when he was a year old to repair his aortic arch, and a third one in October 2001 to fix his mitral valve, when he was barely 2.

In addition to the three heart surgeries when he was an infant, Sean also suffered from asthma, which is associated with Shone’s Complex.

Sean was hospitalized for respiratory-related illnesses throughout first nine years of his life. But the last four years, he hasn’t been admitted to the hospital. His mother is grateful he is doing so well.

“Because of the intervention and the great medical care he received at UCSF, it’s amazing to see Sean leading a normal life,” Hayes-White said. “He’s not held back. He participates actively in soccer, basketball and baseball and has a great attitude.”

Family-Centered Care at UCSF

The Pediatric Heart Center at UCSF Benioff Children’s Hospital offers a family-centered approach to patient care starting from when the baby is in the mother’s womb.

“They spoke to me at a certain level, but they also worked with the two boys who were really fearful and uncertain about what was happening to their little brother,” Hayes-White said. “As much as I tried to explain it to my two older boys, UCSF just did a better job of it. So I really felt supported that way.”

Teitel said a patient’s success relies heavily on not only quality medical care but also the involvement of the patient’s family.

Sean White, far right, poses with his older brothers Riley and Logan.

Sean White, far right, poses with his older brothers Riley and Logan.

“Knowing Sean’s family and knowing Sean, they’re the perfect example of a wonderful family — an incredibly supportive family for Sean — who has gotten involved with a group called the Heart Center where together we’ve been caring for him since he was a little baby and I’m sure he’ll have a wonderful and productive life because of that,” Teitel said.

Sean is no longer on any medication, and his prognosis is good. He is not limited in terms of physical activity.

Sean plans to continue playing baseball and hopefully even make it one day into in the major leagues, just like his sports hero San Francisco Giants catcher Buster Posey.

For kids who are going through Shone’s Complex or any other type of congenital heart disease, Sean says it’s important to stay positive.

“As long as you have a loving and supportive family and great doctors at UCSF, you can do pretty much anything,” he said.