Stories about: heart failure

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

Mav-with-DadIn 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 two 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.

Maverick’s story

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.

Maverick Chenkus was born with hypoplastic left heart syndrome (HLHS), a very serious heart condition in which the left side of the heart is underdeveloped.

Soon after birth, Maverick had his first open-heart surgery but then developed heart failure. He spent his first 8 months fighting for his life at a hospital near his home in New York. Doctors there told his parents, Nikki and Charlie, their son would need a heart transplant in order to survive. But the doctors refused to place Maverick on the heart transplant list.

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

FamilyDakota (2)
The Longe family (Left to right: Brooke, Roger, Erica, and Dakota)

Over the past few decades, more and more children with congenital heart defects have been receiving life-saving surgery soon after birth. As surgical techniques improve, some children who would have died within the first few weeks of life are able to survive — but many still have residual heart failure. Transplant is often the optimal therapy for such patients, but the number of hearts available to transplant has not changed much over the last several years.

“The number of patients listed for transplant is much greater than the number of donor hearts,” says Dr. Elizabeth Blume, director of the Heart Center’s Heart Failure program. “Due to this limitation, we’ve dedicated an entire service to optimizing care for children living with heart failure.”

In recent years, the 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.”

Each Monday for the next four weeks, Thriving is highlighting a very special Heart Center patient who was once listed for transplant, but was removed from the list thanks to successful medical management of her heart disease.

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