Nearly six months following a heart-lung transplant, Nicole Kouri makes a triumphant return to school, alongside her twin sister Isabella. It was a pact she made with her Dad back in August of 2015, while her friends were lying by the pool, soaking up the final days of summer, and Nicole was lying in a bed at Boston Children’s Hospital.
14-year-old Nicole was born with a ventricular septal defect (VSD) — otherwise known as a hole in the heart — and pulmonary hypertension, a serious condition associated with VSD that makes it difficult for blood to flow properly through the lungs.
Being sick was Nicole’s “normal.” …
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. …
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.