Posted on Sep 29,2017
The celebration started long before the first pitch.
Families started to stream in hours before the team took the field.
The 2017 Happy Heart Party, an annual celebration of pediatric heart health by the Johns Hopkins All Children’s Heart Institute, recently included 1,052 current and former patients and their families in the comfy confines of Tropicana Field as the Tampa Bay Rays played host to the Cleveland Indians.
Like most reunions, this day allowed current and former Heart Institute patients and their families to reconnect with doctors and staff outside of the hospital setting.
In addition to cheering on as Heart Institute co-directors Jeff Jacobs, M.D., FACS, FACC, FCCP, and Gary Stapleton, M.D., threw out the first pitch, the festive day included vouchers for concessions, balloons and a host of special giveaways.
The festivities were held high above leftfield in the tbt* Party Deck, where a special group of young patients and their families were celebrating personal victories, thanks to a special team of doctors and nurses who spent part of the afternoon roaming the stands greeting friends and family.
Rooting for the home team took on new meaning as a host of thankful parents shared their appreciation for a lineup of pediatric heart specialists in doctors “A.K.,” Crawford, Jacobs, Karl, Nguyen and Stapleton.
The Johns Hopkins All Children’s Heart Institute is recognized as a top 50 pediatric cardiology and heart surgery program by U.S. News & World Report. It is the largest pediatric heart program that offers pediatric transplantation in the state of Florida, with more than 175 pediatric heart transplants performed to date. The institute’s surgical outcomes are among the best in the nation.
While the game’s final score wasn’t what most fans longed for, a team of patients, their families, doctors, nurses and support staff were celebrating outcomes far greater than what they saw in the field of play.
The reunion took on deeper meaning for one parent, Dana, whose 17-month-old son Logan had open-heart surgery a year ago.
Dana, a St. Petersburg native also served as a teen volunteer at the hospital years ago, working the front desk at Child Life.
“If someone had told me back then that I’d be so involved with the hospital, I would say no way,” she laughs.
Logan’s surgery was to correct two holes–Ventrical Septal Defect (VSD) and Atrial Septal Defect (ASD), Dana says.
He has been seeing Marguerite Crawford, M.D., since he was born in the neonatal intensive care unit (NICU).
Just days shy of celebrating a year since open-heart surgery on Aug. 15, 2016, Logan is doing well and isn’t expected back for an appointment until December, Dana says.
But Dana hopes to spend more time at Johns Hopkins All Children’s as a volunteer. She recently applied for the Parents Advisory Council. The Family Advisory Council is focused on promoting patient-centered care and helps hospital personnel understand the diverse needs of patients and their families.
“We’re just so lucky to have a hospital like Johns Hopkins All Children’s that has everything we need just 20 minutes away,” she said.
‘She's my little miracle baby’
For one family, the day was about celebrating miracles.
Lesa gets emotional when sharing her daughter Olivia’s journey. Born May 23, 2013, at Tampa General Hospital, Lesa said she learned of complications during a gender ultrasound, when a radiologist asked the physician: “Which lung is it?”
Lesa said she couldn’t believe what doctors were telling her.
“The initial diagnosis at 20 weeks was that Olivia didn’t have a diaphragm, her intestines were housed in her lungs and her heart was tilted crooked,” Lesa shares tearfully. “I was then considered high risk.”
“They sat me down and told me the laws of Florida and that Olivia wouldn’t make it through pregnancy and that I had four weeks to make a decision,” she continues, adding that they showed her a fully formed diagnosis: C-CAM congenital malformation of the lung.
Doctors initially told Lesa that if Olivia survived, there was a 100 percent chance that she’d need open-heart surgery.
“They kept telling me she needed surgery but she’s too little. She’ll never get to her 50th percentile weight because she’s a cardiac kid.”
For three years Olivia endured checkups at another facility until Feb. 14, 2016, when her case was assigned to cardiologist Thieu Nguyen, M.D., who told her the Johns Hopkins All Children’s team would be able to help.
Lesa said almost immediately she could see a change in the approach to Olivia’s outlook and treatment.
“Dr. Nguyen made himself available to us,” she said. “Dr. Jacobs, her heart surgeon, said, ‘I do this all the time.’ ”
Lesa calls Olivia her miracle child because her daughter’s outlook has changed drastically for the better.
“For now, we’re just monitoring Olivia yearly,” says Lesa, who added through happy tears that her daughter’s prognosis has gone from a 100 percent chance of needing open-heart surgery years ago to just 10 percent today.
There are times when she’ll get a virus and her nails turn blue, Lesa explains. But as long as her body continues to grow without respiratory infections, they’ll just monitor her, she says.
“I thought the (Happy Heart) event was fantastic,” Lesa says. “After all the doctors’ visits, it was nice to be able to just kick back and enjoy a baseball game with family and friends.
“We ran into and caught up with Dr. Jacobs and Dr. Nguyen. It was so nice to see them and to remember their words, ‘I’m going to treat her (Olivia) like she’s my own child.’
“Those are words you’re comforted by. I can trust knowing that when Olivia’s out playing with her siblings, I can trust what’s going on in her chest.
“As a mom that gives me so much rest and peace … and I just think the world of them.”
‘Maybe one day you’ll run’
For some families, the Happy Heart Party allowed for simply enjoying a day of normalcy.
“It was one of the best days we’ve had out,” says Amanda, whose son Garrett had a heart transplant. “It was amazing. It was relaxing. We just got spoiled at the (Happy) Heart Party … Every single bit of it.”
Garrett was born 10 weeks premature on Aug. 25, 2008 in Orlando at Winnie Palmer Hospital for Women and Babies. He was in the NICU and remained there until Sept. 17 when he was flown by helicopter to Johns Hopkins All Children’s.
Born with idiopathic dilated cardiomyopathy, Garrett's ultrasound revealed that there were more than 2 pounds of fluid under his skin, Amanda says. “Doctors initially said he’s not going to make it.”
On Nov. 16, Garrett had a heart transplant. Alfred “A.K.” Asante-Korang, M.D., and Jacobs were his doctors, she says. On Jan. 22, 2009, he was released from the hospital.
According to the Centers for Disease Control, the advances in treatment are allowing many babies born with congenital heart defects to live longer, healthier lives.
Today Garrett is an inquisitive 8-year old boy who loves computer games. His body still has low muscle tone because of mitochondrial myopathy, Amanda says, so she invested in an adaptable stroller for when they have to walk long distances.
Garrett, who also has autism, has other challenges and is beginning to ask questions.
“Garrett physically can’t run and he’s starting to get frustrated,” she said, adding that he’s noticing more. He wears orthotics on his ankles and he’s asking why his friends don’t have to wear them.
“I tell him, ‘You need to wear them so they can help you be like everybody else,’” says Amanda, adding that she wants him to live a normal life. He’s enrolled in school, and she continues to encourage Garrett to face his challenges head on.
“You walk really fast, maybe one day you’ll run,” says Amanda, who shared that years ago doctors told her that Garrett wouldn’t walk. “I want him to be like every other kid.”
Meanwhile, Garrett is embracing his physical limitations. “He tells kids ‘I had a heart transplant and I’m special,’ ” Amanda says, adding she feels a close bond to the team at the Heart Institute.
“They’re like family to us because we were in there for five months.”
"We were able to take a picture with Dr. A.K. and with Jennifer Carapellucci, the nurse transplant coordinator who we’ve had since the beginning,” she says.
“He’s come a long way and the team at Johns Hopkins has been guiding us through every step.”
Visit hopkinsallchildrens.org/heart to learn more about the Johns Hopkins All Children's Heart Institute.