Pregnant with her second child, Pembroke Pines resident Tina Morton had to undergo a fetal echocardiogram after her baby’s 20-week ultrasound revealed some heart irregularities.
That’s when she got some startling news: The baby had serious heart problems, the cardiologist said. He asked her if she wanted an abortion.
Morton’s answer was a resounding no. Instead, she embarked on a difficult journey, one she has never regretted.
Morton’s daughter, Addison, was born with several heart defects, the most serious called hypoplastic left heart syndrome, a rare congenital heart defect in which the left side of the heart is severely underdeveloped. For those diagnosed with the condition, it means several surgeries and a lifetime of medication and close monitoring. But thanks to modern science, it is 85 percent curable.
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Addison, now 2, is one of an estimated 40,000 babies born in the United States annually with a congenital heart defect,according to the Centers for Disease Control and Prevention. While most people associate heart problems with the elderly, congenital heart defects are the most common form of birth defects. About 25 percent of babies with a congenital heart defect need surgery or other procedures in their first year of life.
“We need more awareness of congenital heart defects,” said Dr. Frank Scholl, chief of congenital heart surgery at Joe DiMaggio Children’s Hospital in Hollywood. “The good news is that most of these heart defects are very treatable. That wasn’t the case even 25 years ago.”
Congenital heart defects can range from a hole in the heart that can heal by itself to conditions even more serious than Addison’s, such as one experienced by Eliana Mendez of Palm Beach Gardens.
We need more awareness of congenital heart defects. The good news is that most of these heart defects are very treatable. That wasn’t the case even 25 years ago.
Dr. Frank Scholl, chief of congenital heart surgery at Joe DiMaggio Children’s Hospital in Hollywood
When Eliana was 3 months old, her parents, Alejandra and Abdiel, took her to the emergency room at St. Mary’s Medical Center in West Palm Beach because she was vomiting. Discovering she had an enlarged heart and liver, doctors had her airlifted to the Children’s Heart Center at Holtz Children’s Hospital, part of UM/Jackson Memorial Medical Center.
Diagnosed with dilated cardiomyopathy — the heart becomes enlarged and cannot pump oxygen effectively — Eliana needed a heart transplant. Fast. That was in June.
By Aug. 21, a heart was found, and Dr. Eliot Rosenkranz, director of congenital heart surgery at Holtz, performed the surgery.
“It was scary because she needed the heart-lung machine after the transplant,” pediatric cardiologist Dr. Paolo G. Rusconi said. “If they do not get off the machine within a week or so, they wind up dying. Fortunately, she recovered. She is doing great now. There are new medications and devices coming out all the time that will likely extend her life.”
Eliana is now 11 months old and looks like a normal child, although she requires twice weekly speech and occupational therapy as she is lagging in her development.
“She loves to play all day long and she’s eating solids,” said her mother, Alejandra. “But she hasn’t started crawling yet. We’re hoping she will soon.”
Eliana will never be cured, and will likely need another heart transplant in 15 to 20 years.
At first, Alejandra Mendez blamed herself for her child’s illness.
“I thought maybe I wasn’t breastfeeding enough, that I was being lazy,” she said. “I blamed myself at the beginning. Now I see it was completely out of my hands.”
Mendez’s reaction is common for parents of children with congenital heart defects, said Scholl, who tries to assuage parents’ concerns.
“They have a lot of guilt that they did something wrong,” he said. “I tell them it’s nothing they did wrong.”
Scholl also encourages parents of children with congenital heart defects to do their homework. Going to major children’s hospitals that have pediatric surgeons and specialists is critical, he said.
“It takes a whole team to figure these conditions out,” he said. “The key thing is for people to do this research.”
At his previous hospital, at Vanderbilt University in Nashville, many patients would travel hours to get treatment for their children.
“We’ve gotten patients from all over Latin America, the Caribbean, even Syria,” said Dr. John Rhodes, medical director of pediatric cardiology services at Nicklaus Children’s Hospital, formerly Miami Children’s. “Sometimes their country will pay for the surgery, sometimes they will pay, sometimes a charity will pay. It all depends.”
You get pregnant and you’re excited, and then all of a sudden you have a ton of bricks thrown at you.
Tina Morton, whose daughter, Allison, was born with several heart defects
Now, with the latest surgeries, 3-D imaging and focus on assembling a multidisciplined medical team, 85 percent to 90 percent of children with congenital heart defects wind up living normal lives.
“Just over two decades ago, they just wouldn’t survive,” Rhodes said. “They didn’t live past the first five years.”
Now, with fetal sonograms commonly performed on pregnant women, children are diagnosed in utero, so a surgical plan can be put into place before the baby is born.
That was the case with Addison. Meeting with Addison’s heart surgeon — Scholl from Joe DiMaggio — and putting a surgical plan together “gave me hope to get through this,” said Tina Morton, a nurse. “I was a zombie. I don’t know how I functioned.
“You get pregnant and you’re excited, and then all of a sudden you have a ton of bricks thrown at you. But after meeting the team . , . you become a family and they give you support.”
The medical team performed surgery on Addison 10 days after her birth. What they didn’t account for was Addison’s heart stopping when she was 4 days old. Her father, Aaron, was holding her when she turned blue. Luckily, Addison was in the pediatric intensive care unit and instantly intubated to help her breathe.
Addison’s surgery, done on schedule at 10 days old, went well, and she has had two surgeries since then. She now takes five medications and may need a heart transplant in the future. But Scholl says she has a good chance of living a normal life.
“I’m so grateful we live in South Florida and have the best care in our backyard,” said Tina Morton, who previously lived in Ocala.
Alejandra Mendez is thankful for insurance that paid for the more than $1 million in medical care that has been spent on her daughter so far. She works as a registered client associate at Wells Fargo, where she gets health insurance. Her husband lost his job at a medical manufacturing company after refusing to return to work when his four weeks of family medical leave ended.
“Thank God we have insurance,” Mendez said.