Jaime Ponce has been hospitalized for heart failure since April, and no one knows when the 5-year-old boy will get to go home — not the doctors who saved his life by implanting an artificial pump to his weakened heart, and not his mother who spends every day by her youngest son’s side in the pediatric intensive care unit.
Jaime needs a new heart.
The one he was born with can no longer squeeze and circulate blood throughout his body, a condition known as dilated cardiomyopathy that also causes his heart to enlarge as blood pools in the organ’s chambers.
While Jaime waits for a matching donor heart to become available, he must have health insurance in order to remain on a national transplant waiting list.
Angel’s Pediatric Heart House, a South Florida nonprofit that aids families affected by childhood heart disease, has been providing the Ponces with financial and emotional support, including paying the monthly premium for Jaime’s health insurance, which he receives through Florida KidCare, part of the Children’s Health Insurance Program for low-income families who do not qualify for Medicaid.
But Angel’s Pediatric Heart House is closing and will no longer accept donations in 2015, said the group’s president, Sonia Perez.
Perez said another nonprofit, Mended Little Hearts, will step in to help the Ponces. A priority will be to raise money to pay for Jaime’s health insurance so that he can remain a candidate for a heart transplant. The Ponces hope Wish Book readers will contribute to that effort.
Steve Bibevski, a pediatric heart transplant surgeon, remembers the day Jaime arrived at Joe DiMaggio Children’s Hospital in Hollywood.
“He was about as sick as you can get,’’ Bibevski said. “His kidneys were failing; his liver was failing, and he was actually in a state of agitation because his brain wasn’t getting enough oxygenated blood.”
The lack of circulation also had caused Jaime’s skin to turn blue, said his mother, Deodorica Ponce.
“He couldn’t fight anymore, even though he tried,” she said, recalling Jaime’s first day at Joe DiMaggio. “The whole night, he was bleeding from his mouth because he was biting his tongue from the pain.”
The following day, Bibevski led a medical team that attached an artificial pump to Jaime’s heart through a surgery that took about 10 hours, Deodorica Ponce recalled.
The device, called a Berlin Heart, works with Jaime’s heart to circulate blood and keep him alive until he receives a heart transplant.
A computerized unit about the size of a moving box, the device is attached to valves and tubes inserted in Jaime’s heart. A round pump dangles from his belly — contracting and releasing rhythmically as blood flows through its transparent plastic casing.
Jaime doesn’t seem to mind the Berlin Heart as he sits in a recliner playing spelling games on a computer tablet in the pediatric ICU room that he has called home since June, after being transferred from Miami’s Holtz Children’s Hospital.
Doctors at Holtz diagnosed Jaime with dilated cardiomyopathy in April, and placed him on a national transplant waiting list for a new heart, Deodorica Ponce said. But she transferred him to Joe DiMaggio because of the improved chances offered by the Berlin Heart, which acts as a bridge until a donor heart becomes available.
“I ask him, ‘Where is my little heart,’ and he points to it,” Deodorica Ponce said. “I tell him when he gets a new heart, he can get rid of that and look like a normal boy.”
No one knows when a matching donor heart will become available for Jaime.
Bibevski said the average wait time at Joe DiMaggio for a child of Jaime’s age is about six months. And while the Berlin Heart will buy time, the device is not designed to last forever, Bibevski said.
“The longest known survivor after Berlin Heart placement to successful transplant is 14 months,” he said. “That’s the longest it’s been pushed out so far. Can we go longer? We potentially can, and if we need to, we can continue.”
But there are limitations. The pump is made of silicone plastic, and the valves and tubing are not designed to last forever like many of the heart pumps that surgeons implant in adults, Bibevski said.
Jaime’s wait time will depend on a number of factors:
First, he must find a donor heart that matches his blood type, and one that is the right size for him — although pediatric patients are generally first in line for other children’s organs.
Then, because hearts can only be preserved for a limited time, the recipient must live within a specified geographic radius of the hospital where the organ is donated.
Bibevski said his transplant team is willing to push the limits of how long the heart can remain viable outside of the body — increasing the chances that a donor heart will find its way to Jaime.
“The standard for hearts is around six hours,” he said, “and we’ve already performed transplants here with eight hours ischemic times. … We tend to be a little more liberal here if the organ is in good condition.”
In Florida, as of Dec. 26, there were 13 patients between the ages of 1- and 5-years-old waiting for a heart transplant, according to the Organ Procurement and Transplantation Network, a federally-designated organization that coordinates the allocation of organs nationwide.
According to the OPTN data, two of those patients have been waiting five years or longer for a donor heart, and three of them have been waiting between three and five years. Four patients have been waiting six months to a year, including Jaime.
Deodorica Ponce said she does not know what caused her son’s dilated cardiomyopathy, which can be inherited but also can be caused by other factors, including viral infections of the heart.
Yet Jaime may not be the Ponces’ first child stricken by the disease. Deodorica Ponce said her daughter died in 2010 at the age of 3 after suffering symptoms similar to the ones that led to Jaime’s hospitalization, including vomiting, fatigue and shortness of breath.
Deodorica Ponce said Jaime first became ill around 2012, while she and her four children still lived in Mexico, in the state of Querétaro.
Jaime Ponce, Sr., the father, has lived and worked in the United States for nearly 30 years, and he is a legal resident, Deodorica Ponce said. He began applying for his family to join him in Florida in 2001, she added. The family settled in Homestead in 2013 but recently moved to Hollywood.
Deodorica Ponce said doctors in Mexico diagnosed Jaime with an enlarged heart after he first fell ill, prescribing medication that helped to keep the boy healthy.
But a few months after the Ponce family arrived in Homestead, Jaime became ill again — even though, Deodorica Ponce said, he continued taking his medication.
After two visits to the emergency room, including one visit that turned into a three-day admission, Deodorica Ponce said she was given an appointment with a pediatric cardiologist at Jackson Memorial Hospital.
Jaime was diagnosed with dilated cardiomyopathy. But it wasn’t until Angel’s Pediatric Heart House stepped up to pay Jaime’s monthly premium for health insurance that the boy was placed on a national transplant waiting list.
“They had to have insurance,” said Perez, the group’s president.
Deodorica Ponce said she is hopeful that a successful match will be found for Jaime, although she also is aware that another child must die — and another family must suffer — for her son to continue to live.
“I know when he receives a new heart, I will be thinking of the family who lost their little angel,” she said. “So I don’t know how I will feel or what I will think.”
But she also longs for the day when the youngest of her four children can run and play like other kids, without losing his breath or risking his life.
In a corner of the room, next to the bed where Deodorica Ponce sleeps each night, is a pile of toys that Jaime received for Christmas: a case of Matchbox cars, a Thomas the Tank train set, and other playthings.
A photo of Héctor Herrera, a Mexican soccer star who plays for the national team, hangs on one wall. Drawings of super heroes, including Spider-Man, adorn his bedside.
The gifts are from well wishers, including physicians and nurses at Joe DiMaggio, who chose the Ponce family as recipients of their annual Christmas gift giving campaign.
Deodorica Ponce said her family is grateful for all the kind people who have entered their life. They have given her faith, especially the children who have received heart transplants.
Those children, she said, have shown her that Jaime, too, can live a normal childhood.
Until then, Ponce said, she tries to imagine the day when Jaime finally receives a new lease on life.
“I don’t care how long I have to wait in the hospital with him,’’ she said. “But I just pray that we leave the hospital together and healthy.’’
How to help
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