Stories about: Dr. Wayne Tworetsky

Hope for Kevin’s heart: Five-year-old shines after novel treatment for Ebstein’s anomaly

Kevin, who was born with Ebstein's anomaly, practices his dance moves.As the lights dimmed and Pharrell Williams’ “Happy” blasted from loudspeakers, Kevin Nolan III took to the stage for his very first dance recital. Sporting striped pants, a turquoise bow tie and a black top hat, Kevin joined his class in performing two hip-hop jazz routines to a packed house. Kevin’s mood was perfectly in step with the song’s lyrics.

“He had so much fun,” says Kevin’s mom, Laura. “He said he can’t wait to get on stage again.”

While a first dance recital is a big deal for any 5-year-old, it’s especially poignant for Kevin, who was diagnosed prenatally with Ebstein’s anomaly, a rare heart condition that causes leakage of the tricuspid valve and backup of blood flow into the heart. Kevin also had pulmonary valve regurgitation, which was stealing blood flow away from his essential organs. His condition was so severe that when it was first discovered during a prenatal ultrasound, doctors at a hospital in Boston said he might not survive.

“We met with a heart specialist who told us we should just say goodbye,” says Kevin’s dad, Kevin Jr. “He said nothing could be done.”

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Looking back and ahead: The heart that made history

Jack makes history with fetal cardiac intervention

In the early morning of Sept. 11, 2001, Jennifer Miller was preparing to make history. She lay in pre-op, ready for the Boston Children’s Hospital Fetal Cardiology team to perform the world’s first fetal cardiac intervention on her unborn son.

Two weeks earlier, at her 18-week screening ultrasound, Jennifer and her husband Henry were told their son would be born with hypoplastic left heart syndrome (HLHS), a life-threatening heart defect where the left ventricle is small and underdeveloped. If born with HLHS, their son would immediately undergo multiple open-heart surgeries to repair his heart and, later, may need a heart transplant.

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Joshua’s story: Advances in medical management of pediatric heart failure

heart failure managed with medicineIn recent years, the Boston Children’s Hospital Heart Failure team has made significant strides in slowing the progress of heart failure in children. In some cases, disease progression has been slowed enough for the patient to be taken off of the heart transplant list for being “too well.”

The following is part four of a four-part series featuring  Boston Children’s Heart Center patients who were once listed for transplant but were removed thanks to successful medical management of their heart disease.

Surgery before birth

Joshua Brennan, now 12, was diagnosed with complex congenital heart disease (CHD) in utero. At his mother’s 20-week ultrasound, the prognosis was devastating: half of Joshua’s tiny heart was non-functional. His parents, Kim and Tom, began furiously researching their options.

By luck, they connected with a doctor who had just heard about what Boston Children’s was doing in the field of fetal cardiac interventions.

This story is part of a four part series on patients who were taken off the heart transplant list thanks to medical management. Read the entire series here.

The Brennans quickly called the Boston Children’s Heart Center and in no time, left their home in Pawling, NY for Boston to see if Dr. Wayne Dr. Tworetzky, director of the Fetal Cardiology Program, thought Joshua was a candidate for the procedure. He was. Soon after, Joshua was one of the first in the world to have heart surgery before birth.

The procedure, an aortic valve dilation, reset the developmental course of Joshua’s left heart and salvaged enough function for it to pump normally after he was born. 

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Kalev’s story: Advances in medical management of pediatric heart failure

Kalev-11In recent years, the Boston Children’s Hospital Heart Failure team has made significant strides in slowing the progress of heart failure in children. In some cases, disease progression has been slowed enough for the patient to be taken off of the heart transplant list for being “too well.”

The following is part three of a four-part series featuring Heart Center patients who were once listed for transplant but were removed thanks to successful medical management of his or her heart disease.

Searching for answers

This story is part of a four part series on patients who were taken off the heart transplant list thanks to medical management. Read the entire series here.

Thirty weeks into her second pregnancy, Katie Rosenthal just felt like something was wrong. She asked her obstetrician for another ultrasound and soon discovered that her unborn baby’s heart was in serious danger.

Almost immediately, Katie was admitted to a large hospital close to home in Colorado. The fetal cardiologists weren’t exactly sure what they were dealing with but decided to place Katie on an extremely high dose of digoxin in the hopes that the drug would get to her unborn child’s heart and help it contract.

After spending four days at the hospital, Katie and her husband Eric decided they needed a more conclusive diagnosis regarding what was really wrong with their baby’s heart. They went to another hospital in Colorado and received a new diagnosis. Confused, anxious and determined to do what was best for their child, the Rosenthals asked family friends in the medical field as well as their pediatrician: “What would you do if it was your child?”

“They all said, ‘Go to Boston,’” says Katie.

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