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 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.
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.
A surprise diagnosis of pediatric heart failure
Throughout his childhood, Joshua went on to have multiple open-heart surgeries. When he was 10, Joshua visited the Heart Center for a routine checkup with his primary cardiologist, Dr. TP Singh.
However, Joshua’s echocardiogram revealed his heart was in serious trouble. He had to be admitted to the hospital and ended up needing a pacemaker to stimulate a normal heart rhythm as well as an aortic valve replacement, because his was no longer working properly. After all that, his doctors were still concerned.
“They suggested we place him on the transplant list, so we did that, which is a process in itself,” says Kim.
“Then they tried a new medicine, Coreg, and put him on a special diet: low sodium, restricted fluid, no water.” (Coreg slows the heart’s contraction rate and thus helps reduce its workload.)
“He did a complete 180,” says Tom. All in all, Joshua was active on the transplant list for less than a year.
Today, Joshua has no symptoms of heart failure, although he still returns to Boston Children’s for follow-ups. He will continue to be followed for his congenital heart disease for the rest of his life.
The active seventh grader’s favorite activities are volunteering at the Pawling firehouse, swimming, biking and cooking. Joshua says he started seriously cooking at 10. “But when I was 5, I would pull up a chair and help my grandma while she was baking.” His favorite dish to make is chicken lo mein, and he also makes breakfast for his whole family on weekends.
Joshua has some advice for other kids with congenital heart disease and heart failure: “Be strong. What the doctors do will make your life better as it goes on.”
For more information about fetal cardiology and resources for expectant parents, visit bostonchildrens.org/fetalheart.