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.

Kalev with Dad and Grandpa
Kalev with Dad and Grandpa

Dr. Wayne Tworetzky, director of the Fetal Cardiology Program at the Boston Children’s Heart Center, reviewed Kalev’s case and determined that he was suffering from a very large left ventricle aneurysm.  The diagnosis was rare and quite different from what any of Kalev’s previous doctors had suspected. The Rosenthals concluded that Boston was the right place for them.

“We had our ultrasound echoes from Denver uploaded digitally to Dr. Tworetsky on a Thursday,” Katie says. “We were on the last flight out that night and able to come to Boston for an appointment on Friday. The program at Boston Children’s Heart Center put forth an incredibly cohesive, multidisciplinary effort to make sure our baby was receiving the best treatment possible.”

Fighting heart failure as a family

The family received care on a weekly basis from the time they arrived in Boston to the day Kalev was born. At 8 days old, Kalev seemed ready for discharge, but Katie had other issues.

Sudden onset appendicitis kept Katie next door at Brigham and Women’s Hospital for another few days, and Kalev remained at Boston Children’s. “That appendectomy was a miracle!” remembers Katie, because Kalev suddenly went into acute heart failure and was rushed back to the ICU while she was an inpatient.

Cardiac surgeons Dr. Sitaram Emani and Dr. Pedro del Nido removed some of Kalev’s aneurysm and repaired his leaky mitral valve. Still, Katie and Eric were advised to place Kalev on the heart transplant list.

“We stayed in the ICU for 93 days,” remembers Katie, “and Kalev was on the transplant list as a 1A — the most urgent status — for nearly that entire time. All in all, the four of us (mom, dad, Kalev and older sister Shayna) were at Boston Children’s for a total of 6 months.”

In addition to daily care, the family met weekly with their large team of doctors, including Dr. Elizabeth Blume, Dr. Christopher Almond, Dr. Leslie Smoot and of course, Dr. Tworetzky.

“The best part was how all of the doctors were working together,” says Katie.

During his stay at Boston Children’s, Kalev was placed on a medical regimen of Ativan, methadone, digoxin, milrinone and various other drugs that address different components of surgery and heart failure. By the end of 6 months, it was evident that Kalev’s heart was going to heal. He was eventually weaned off many drugs and is now being managed with Coreg, enalapril, digoxin and a few other heart healthy supplements. Kalev was inactivated from the transplant list on December 24, 2013, and has amazingly remained off the list ever since.

Today, 2-year-old Kalev has minimal residual mitral valve leakage, and his heart is doing remarkably well.

“He has so much energy,” Katie says. “He’s so full of life. He must run about two miles every day. When we go to the park, he refuses to ride in the stroller. He runs there, runs around playing and runs home!”

Kalev-first-family

For more information about fetal cardiology and resources for expectant parents, visit bostonchildrens.org/fetalheart.