Before Maria de la Paz was born, her parents Violeta Gustale and Orlando Cazal learned their unborn daughter had a complex congenital heart disease called hypoplastic left heart syndrome (HLHS).
With HLHS, the left side of the newborn’s heart is so underdeveloped that it cannot pump enough oxygenated blood throughout the body. The standard treatment is a series of three corrective surgeries to re-route blood flow through the heart. The first surgery is performed at birth, the second at six months and the third about two or three years later.
Violeta and Orlando were presented with four options:
- Travel from their home in Paraguay to Boston Children’s Hospital for treatment. The Boston Children’s Heart Center had a 95 percent success rate for the surgeries Paz would need (this was in 2011; today, that rate is 97 percent).
- Go to São Paulo, Brazil, where the best hospitals had a 75 percent success rate for the same surgeries.
- Go to Buenos Aires, Argentina, where surgical success rates hovered around 50 percent.
- Stay in Paraguay and have the surgeries there. Paz could be the country’s first success story, and the hospital would cover all medical expenses.
They made their decision right away. Their daughter would be born at Brigham and Women’s Hospital and treated at Boston Children’s.
Long Island middle school teacher Carole Going texts her student Jessica every day. Even just a simple exchange of “How are you feeling today?” and “Good, thanks!” can calm Going’s nerves. “I didn’t know her very well before the event happened,” she says. “We only had eight classes by that point.”
A month and a half ago, Jessica was in science class when she suffered a sudden cardiac arrest.
Going says it was her co-teacher, Ann Marie Carlson, who first noticed Jessica appeared weak: “She started to ask ‘Are you OK?’” but couldn’t even get all the words out before Jessica fell back on the floor.”
In 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. …