Nemours Children’s Hospital will find out on Friday if the state is going to give initial approval to its application for a new heart and lung transplant program, which would be Central Florida’s first and the fifth in the state.
This is good news to parents such as Kelly Green, an Orlando resident whose 9-year-old son has congenital heart disease and might one day need a heart transplant.
“Knowing that my son might have a chance to get the transplant here would be extremely beneficial,” said Green, who wrote a letter to the state in support of Nemours’ “certificate of need” application.
But critics say Florida doesn’t need a fifth program. They worry that having too many programs for such a complex procedure will result in a drop in everyone’s caseload and can lead to bad outcomes.
“While no family dealing with the incredible pressures that accompany a critically ill child want to have to travel for services, the reality is that having too many programs will dilute the quality of care,” said Dr. Jeffrey Jacobs, surgical director of Heart Transplantation and Extracorporeal Life Support Program at Johns Hopkins All Children’s Hospital in St. Petersburg, in an email.
A immunization committee for the U.S. Centers for Disease Control released its 2017 advisory for recommended shots affecting adults. (Feb. 9, 2017)
A immunization committee for the U.S. Centers for Disease Control released its 2017 advisory for recommended shots affecting adults. (Feb. 9, 2017)
A immunization committee for the U.S. Centers for Disease Control released its 2017 advisory for recommended shots affecting adults. (Feb. 9, 2017)
A immunization committee for the U.S. Centers for Disease Control released its 2017 advisory for recommended shots affecting adults. (Feb. 9, 2017)
Orange and Seminole County governments are readying to hire more staff to their respective mosquito control programs to prepare for the Zika virus in the summer months.
Orange and Seminole County governments are readying to hire more staff to their respective mosquito control programs to prepare for the Zika virus in the summer months.
The state Office of Compassionate Use held a public hearing to aid in drafting regulation to provide medical marijuana under amendment 2.
The state Office of Compassionate Use held a public hearing to aid in drafting regulation to provide medical marijuana under amendment 2.
A new study suggests that a couple days of camping in the great outdoors can reset your circadian clock and help you get more sleep. (Feb. 3, 2017)
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Doctors from Florida's Hospital's Transplant Institute talk about their success in a rare 8-person kidney exchange that included 3 central Florida patients. (Joe Burbank/Orlando Sentinel)
Doctors from Florida's Hospital's Transplant Institute talk about their success in a rare 8-person kidney exchange that included 3 central Florida patients. (Joe Burbank/Orlando Sentinel)
Dr. Mark Bleiweis, director of UF Health Congenital Heart Center, expressed a similar sentiment, adding that there isn’t a shortage of programs in Florida. “We’re limited by donors, not by the number of centers in the state,” he said.
Are 3 pediatric heart surgery centers in Central Florida too many? »
There are currently 39 children in Florida under the age of 18 waiting for a heart transplant, according to the latest data from Organ Procurement and Transplantation Network. Many have been waiting for 90 days or more. A few have been on the list for five years or more.
Trey Flynn’s 3-year-old son Holden died in 2014 after four heart surgeries and being on a heart transplant list for three months.
“The concern that was always presented to us wasn’t location, but was more about not having enough organs, and that’s what we ran into,” said Flynn, who has become an advocate for raising awareness about congenital heart disease, establishing the Yellow Brick Road foundation.
After researching programs in Gainesville, St. Petersburg, Boston and Philadelphia, the Flynns decided to work with Gainesville — if a transplant were to come through.
“Displacement is a concern, but you like to see the programs through their numbers and what they’re doing before saying go ahead and take care of this because you’re local,” he said.
Nemours officials said that although the hospital has not performed heart transplant procedures, it has an experienced team.
Dr. Peter Wearden, who has built the hospital’s Cardiac Center in the past two years, “has successfully treated thousands of patients with challenging cardiac conditions and participated in the care of more than 170 pediatric thoracic transplant patients prior to coming to Nemours,” hospital officials said in a statement.
They added that the new program will bring a much-needed service in a rapidly growing area.
In its annual reports, Florida doesn’t publish the projected need for pediatric heart transplants. Instead, the applicants should to demonstrate that there’s a need.
None of the existing pediatric heart transplant programs in Florida fall in the state-designated service area that includes Orange County, but critics say that still doesn’t make a case for a program.
Central Florida’s 4-year-old free-standing hospital established a pediatric heart surgery program last June. The hospital wouldn’t say how many surgeries the program has performed so far, but according to the state rule, applicants should include documentation for at least 200 catheterization procedures and 125 open heart surgeries before the Certificate of Need deadline.
The most recent application for a heart transplant program, filed by Variety Children’s Hospital in Miami in 2015, was denied.
nmiller@orlandosentinel.com, 407-420-5158, @naseemmiller
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