"I want a new heart." That was 3-year-old Jason Carpenter’s first request when two representatives from the Make-A-Wish Foundation paid him a visit.
Monique Carpenter said her own heart broke into a million pieces when she heard those words from her son, who suffers from congenital heart disease (CHD).
The child’s second wish was a bit more attainable. He wanted to see his Toy Story favorites, Buzz and Woody!
His "wish team" — Jeff Novak from Unique Industries and Steve Warrington of Warrington Financial Corp. — got right on it.
Now, thanks to the Make-A-Wish Foundation, the Carpenters are on their way to Disney World in November.
"We’re all looking forward to a week away from the world where we can just be together and have fun and forget about the world for a little while," said Monique, a lifelong South Philly resident and 1983 St. Maria Goretti grad.
It’s a bit of good news for a family that has heard far too much bad news over the past three-and-a-half years.
It began when Dr. Rashmin Savani, a neonatologist at Children’s Hospital of Philadelphia, called Monique’s husband John on March 27, 1999, the day Monique arrived home after giving birth to Jason.
Savani said he detected a heart murmur in the infant, who was born eight weeks premature.
Monique said her normally calm husband "fell apart."
John, a driver for Samuel & Sons Seafood, was too distraught to even deliver the news. Monique had to call the doctor back to get the story firsthand.
Savani explained that a heart murmur in and of itself is not always a bad thing. A lot of times, a murmur ends up being nothing.
Sadly for the Grays Ferry family, this would not be one of those times.
An echocardiogram revealed a small hole in Jason’s heart, said Monique. The technical term for such a hole is Ventricular Septal Defect (VSD).
"My whole world fell apart. I was scared to death. I thought I was going to lose my son," she said.
Hope rose for the Carpenters and their 9-year-old daughter Nicole when doctors told them Jason’s hole might close on its own.
The first eight weeks of Jason’s life were spent in CHOP’s Neonatal Intensive Care Unit so Savani and a team of doctors could monitor the child’s condition.
"I always refer to [Savani] as one of Jason’s angels. He cared for my son as if Jason was his own and I credit him with saving my son’s life," said Monique, who works as an intellectual property specialist for CHOP.
When the family finally welcomed its new addition home, Monique said everybody relaxed and resumed their lives, believing Jason’s heart defect would mend itself.
But things took a turn for the worse when Jason was 2, and a test revealed the toddler’s heart was working harder than it should be. So doctors ordered a cardiac catheterization, the results of which were alarming.
What doctors thought was originally a small hole was actually twice the size, said Monique.
A hole of that size fell into the category of VSDs warranting open-heart surgery, said Dr. Gil Wernofsy, a cardiologist at CHOP.
"Our world shattered again when we were told that," said Monique. "That was just the most terrifying thing of all. Open-heart surgery is just so dangerous for children."
Dr. Thomas Spray of CHOP performed Jason’s surgery on July 2, 2001.
Handing Jason over to the surgeons was the single most difficult thing Monique and John ever had to do, she admitted. But when the couple saw the look on Dr. Spray’s face, they knew Jason’s surgery was a success, she recalled.
With the hole now repaired, Jason was far from out of the woods.
Because of its size, and having gone unchecked for as long as it did, the hole wrecked havoc in the 2-year-old’s heart, said Monique.
As a result, Jason was diagnosed with aortic insufficiency because his aortic valve was damaged. The condition leaves the child vulnerable to bacterial infections and respiratory problems.
Today, Jason’s condition is considered life-threatening, said his mother.
According to the Congenital Heart Information Network (www.tchin.org), one in 100 births — 40,000 a year — results in some form of CHD. One in every 10 of those cases is a fatal defect. Twice as many children die each year from some form of CHD than from all childhood cancers combined.
"I had no idea how common CHD is," said Monique. "We were shocked to hear how much it occurred and the deaths that occur from it."
Despite the statistics, awareness of CHD is astonishingly low, said Monique.
The Carpenters’ lives now revolve around educating the public about the disease. They founded a support group for families touched by CHD (devoted.to/specialhearts).
"I am determined to spread awareness of CHD in any way possible," Monique said. "I encourage people to donate blood and to become organ donors. I advise women to get good prenatal care, including ultrasounds, which can often detect a heart defect."
Reflecting on the trials of recent years, Monique said she doesn’t feel sorry for Jason or her family because she feels the whole experience has actually been a blessing.
It’s taught her what is important in life and helped her put things in perspective, she said. Things she used to take for granted, like her daughter’s good health, she no longer does. Above all, she said, the whole situation has allowed her to experience a rare depth of motherhood.
"While it all seems very sad, it has enriched our life so much. Jason has just been this huge blessing for us."
For more information on CHD, visit www.chop.edu/consumer/your_child/condition_section_index.jsp?id=-9282 or www.tchin.org