Jaehoon and Sejeong were stunned to learn during a 20-week ultrasound that their baby boy had hypoplastic left heart syndrome (HLHS), among the most severe congenital heart defects. With HLHS, the left side of a baby’s heart does not form properly in utero and requires multiple open-heart surgical procedures. The first surgery usually happens just days after birth.
The suburban Chicago parents sought a second opinion from The Heart Center at Ann & Robert H. Lurie Children’s Hospital of Chicago, knowing the institution had a nationally ranked pediatric cardiology program. The family found an experienced team there, and when their baby boy, Daniel, was born last summer, the parents decided his first surgery, known as the Norwood procedure, would happen at Lurie Children’s.
When studying the necessary second procedure for Daniel, the family got another boost of confidence. Dr. Sunjay Kaushal, an internationally recognized pediatric heart surgeon and researcher, came to Lurie Children’s in the fall as its new head of cardiovascular-thoracic surgery.
An expert in treating HLHS, Dr. Kaushal is also a renowned researcher, leading a team of stem cell biologists at Stanley Manne Children’s Research Institute. Dr. Kaushal and his team are currently leading a first-of-its-kind clinical trial looking at the use of stem cells in helping rebuild cardiac muscles in children with HLHS and other severe heart conditions.
“This will be a potential game-changer for children with not only hypoplastic left heart syndrome, but for the general population with congenital heart disease,” Dr. Kaushal said.
The phase II trial starts this summer, which will help the research team understand if the treatment works in these patients. Lurie Children’s researchers will actively be seeking patients with HLHS to receive stem cells during surgery. This phase of the study will last about three years.
During the innovative surgery, stem cells, which are donated from adults, are injected into the tiny patients’ heart muscles during an open-heart procedure. They are used to help boost the strength of the unformed part of the heart. Dr. Kaushal and his research collaborators, who have been working on this research project for more than five years with promising early results, hope that this stem cell therapy will further enhance the long-term survival of patients with HLHS.
Today, about 65 percent of babies with the condition live into adulthood, though many need heart transplants in addition to at least three open-heart procedures. Dr. Kaushal and his team hope to prove that stem cell therapy eradicates the need for a heart transplant and increases the chance for babies like Daniel to grow up and live full lives.
In March, Daniel was about nine months old when he became the first cardiac patient at Lurie Children’s to undergo stem cell therapy.
Dr. Kaushal and his team injected about 300,000 stem cells into his heart muscle while the baby underwent his second open heart surgery for HLHS, known as the Glenn procedure.
Daniel’s progress will be monitored by Dr. Kaushal and the research team throughout the boy’s life, and his future looks promising. For now, three months following surgery, Daniel has fully recovered from the procedure and getting stronger and smarter every day, his parents said. In June, he celebrated his first birthday.
“Daniel has done remarkably well having had two major open-heart surgery for his HLHS,” Jaehoon said. “My wife and I feel fortunate that we have great hospital available for Daniel’s medical care.”