A Parent’s Emotional Agony When an Infant Undergoes Heart Surgery

One family describes their ordeal, while medical professionals say infant heart procedures are becoming safer despite nine deaths at a Florida hospital.

Open-heart cardiac surgeries on infants are getting safer,

A leading cardiothoracic surgeon gave Healthline that assessment, despite one Florida hospital's high mortality rate from such operations, which CNN revealed in June.

While that news was frightening, Dr. James Tweddell, a member of the medical advisory board for the Pediatric Congenital Heart Association (PCHA), said “every aspect” of infant cardiac surgeries is “getting better and safer.”

A year-long CNN investigation found that from 2011 to 2013, St. Mary's Medical Center in West Palm Beach, Florida, had a 12 percent mortality rate for infant heart surgeries, more than three times the national average.

According to the report, since the hospital’s program began in 2011, nine infants died there after undergoing heart surgery.

That CNN revelation led the medical center to suspend open-heart infant cardiac surgery.

After the story was broadcast, the hospital also announced it would conduct a comprehensive review of its pediatric cardiology program that will involve outside experts.

A CNN update on August 18 reported that St. Mary’s has closed its child heart-surgery program.

The investigation also sparked a federal probe of the hospital by the Centers for Medicare and Medicaid Services. St. Mary's reported to the state of Florida that most of the babies in the hospital's open-heart surgery program were Medicaid recipients.

Get the Facts on Hypoplastic Left Heart Syndrome »

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One Family’s Heart Surgery Ordeal

One family’s experience with infant cardiac surgery has been more difficult and frightening than most.

Gina and Kyle are parents of a baby born missing half of his heart. The defect – hypoplastic left heart syndrome (HLHS) – appeared on a routine ultrasound when Gina was 22 weeks pregnant.

If untreated, the condition is fatal. Treatment requires either a transplant or a three-step surgical procedure called staged palliation.

In an interview with Healthline, Gina described her ultrasound appointment. Her family was with her when the technician indicated her unborn baby’s left side of his heart was tiny compared with the right.

We all started crying. I would wake up in the night crying. I buried my face in the pillow, screaming, ‘No, no, no!’
Gina, mother of heart surgery infant

Gina said her first reaction: “What did I do to cause this? Did I forget to take my prenatal vitamins?”

“We all started crying. I would wake up in the night crying. I buried my face in the pillow, screaming, ‘No, no, no!’” Gina recalled. “We searched the Internet for answers. I called everyone I knew, practically begging for loving support. We sent emails. We prayed. We reached out to a support group.”

Their son, John, was born four years ago. Six days after his birth, he underwent staged-palliation surgery (also known as staged reconstruction), which is considered one of the recent major achievements of congenital heart surgery.

According to statistics from the University of California, San Francisco, the HLHS survival rate for children at age 5 is about 70 percent and most of those children have normal growth and development.

“Surgeons first saved John’s life when he was six days old,” Gina said. “He was a breastfeeding 5-month-old when he had his second-stage surgery. The final stage of his heart repair was just days after blowing out candles on his birthday cake, marking his third year of life.”

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A Long, Difficult Journey

The journey has been agonizing for the family.

At John’s birth, their first problem was to find a surgical team and a hospital they could trust.

After a frustrating meeting with one cardiologist who walked away, Gina said she “turned to the Internet and basic word-of-mouth for help.”

“I found hundreds of heart stories with almost every writer trying to advertise whichever hospital, surgeon or cardiologist they became emotionally attached to,” Gina recalled. “I was confused. Persuasive advertisements and marketing techniques were everywhere. But I had no hard facts.”

“I felt stuck in a huge, money-sucking industry that was impossible to navigate, filled with vagueness and manipulation,” she added. “It’s not like you can Google, ‘Which hospital within a 500-mile radius of where I live is the most honest, trustworthy, and does the right thing?’”

Today, parents faced with infant heart surgery can find information and resources on the PCHA website, www.conqueringchd.org.

The organization’s goal is to “empower patients and families by providing educational resources necessary to achieve the highest quality care available.”

Amy Basken, a PCHA spokesperson, told Healthline that congenital heart disease is the most common birth defect, affecting one in 100 births.

“Approximately one third of babies born with congenital heart disease will require at least one lifesaving intervention in the first few days or weeks of life,” she said. “The good news is that most babies will survive.”

She noted the Society of Thoracic Surgeons' database shows that survival has improved over the past 17 years. Now, more than 97 percent of children will survive.

Get The Facts on Heart Disease in Children »

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Family Finds a Trusted Team

After a lot of research and referrals, Gina and Kyle entrusted their baby’s life to a team of surgeons at a nearby medical center.

“With tenacity, dedication, and grace, the surgeons used the beating-heart method when they performed the Norwood procedure on our fragile infant,” Gina said. “Even among HLHS infants, John was especially weak because his aorta was tiny, only a few millimeters in diameter. The surgeons enlarged his aorta, made some extra tunnels, and completely rerouted his blood flow.”

They took John home at six weeks.

“Once his diet could tolerate my milk,” Gina said, “this sweet baby boy started to breast-feed. It was awesome, nothing short of a miracle.”

John remained blue in color until he was strong enough, at five months, for his second open-heart surgery, known as the Glenn procedure. Surgeons attached the superior vena cava to the pulmonary artery, allowing for more oxygenated blood.

“After that surgery, he cried all night,” she said. “Around 4 a.m., the nurses brought in a bigger bed so I could help soothe him. Once he was cuddled up next to me, he looked me in the eye and gave me the biggest smile. We took him home about two weeks post-op, and the appointments were less frequent.”

During the third surgery, the Fontan procedure, surgeons attached his inferior vena cava to his pulmonary artery. He has made “tremendous progress” in his recovery, his mother said, but recent lung problems presented a setback the doctors are still addressing.

Nonetheless, John is now a “thriving” 4-year-old, Gina said.

“He fights with his siblings, eats pizza, and gives slobbery kisses,” she said. “He is enrolled in a ‘normal’ preschool and meets his developmental milestones. Just the other day he wore his cowboy hat and whispered in my ear, ‘Mom, I wuv you more than the wild, wild West.’”

Technology Lessens Surgery Dangers

In an interview with Healthline, Dr. Tweddell, one of the foremost practitioners in this field, said modern technology is making infant heart surgeries safer.

“We have better diagnostic imaging, better intra-operative support, and better intra-operative monitoring,” he said. “Post-operative care is getting more sophisticated, and we are less tolerant of a child that does not appear to be on the right track. We are more likely to get additional studies to see why they are not progressing, and may submit them for reintervention before they get too sick.” 

On June 30, Tweddell became executive co-director of the Heart Institute and professor of surgery at Cincinnati Children’s Hospital Medical Center. He is the former medical director of pediatric cardiothoracic surgery at Children’s Hospital of Wisconsin in Milwaukee.

With decades of experience, Tweddell knows how to counsel parents whose babies need cardiac surgery, how to involve them, and how to ease their fears.

Honesty is always the best policy. I try to be straightforward. I explain the baby’s heart problem and what we need to do to fix it.
Dr. James Tweddell, Pediatric Congenital Heart Association

He said the most difficult part of his job is telling parents of high-risk infants about the dangers of such procedures.

“(It centers on) how to convey the risks of surgery without taking away hope but, at the same time, providing a realistic assessment of the risks,” he said. 

It’s not always easy to calm an anxious parent.

“Honesty is always the best policy,” said Tweddell. “I try to be straightforward. I explain the baby’s heart problem and what we need to do to fix it. I tell them all the things that can go wrong, and the percentages. We talk about alternative treatments, if any. I try to give them the necessary time.” 

If an infant needs heart surgery, parents should consider the depth and breadth of the hospital’s program, Tweddell added.

“The program should be in a dedicated children’s hospital that offers all pediatric-cardiology subspecialties,” he said. “They should have a dedicated ICU team. They should have ECPR (extracorporeal cardiopulmonary resuscitation), a 24/7 operating room, cardiac-catheterization lab availability, and more than one surgeon.”

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Hopeful Future for Infant Surgeries

In the future, babies with HLHS could benefit from a newly developed hybrid strategy that may compensate for the disadvantages of the standard, three-stage palliation procedure, according to an August report in The Journal of Thoracic and Cardiovascular Surgery, the official publication of the American Association for Thoracic Surgery (AATS).

This procedure allows surgeons to defer the more complicated cardiac reconstruction until the child is older and stronger, and can recover successfully from surgery.

Researchers, according to an AATS press release on the report, examined “whether an arterial shunt in the hybrid palliation may be a better source for the pulmonary blood supply than the more frequently used venous shunt.”

This is the difference between your child spending the rest of his life in a wheelchair, or walking off the bus to go to kindergarten.
Gina, parent of heart surgery infant

Dr. David M. Overman is chief of the division of cardiovascular surgery at the Children's Hospitals and Clinics of Minnesota, in Minneapolis.

In an editorial that accompanied the JTCS report, he wrote that hybrid surgery strategies are currently used only for a minority of patients. He acknowledged, however, that there is a place for hybrid surgery with higher-risk patients.

"The impact and advisability of that particular approach, while intuitively resonant, is still an open question,” he added.

Gina’s advice to parents facing heart surgery for their baby is “keep asking questions.”

“Do not settle for vagueness and shoulder shrugging. I know how hard it is to muster the strength to ask, and I know how desperate you feel to just trust and settle,” she said. “Ask for hard data. Get a second opinion. This is the difference between life and death for your child. This is the difference between your child spending the rest of his life in a wheelchair, or walking off the bus to go to kindergarten.”