Rylas Sexton was 1 of 5 children to participate in the clinical trial
A study looking at safety and feasibility of infusing cord blood stem cells into the hearts of babies born with a defect known as hypoplastic left heart syndrome (HLHS) is nearing completion, and we have already heard of one family who is sleeping better knowing their little boy is on the road to recovery.
HLHS occurs in approximately 1,000 births each year in the United States and is when the left side of the heart does not fully develop. The child must undergo a series of three surgeries over the same number of years to effectively re-plumb the blood flow to the heart.
“Prior to the 1980s and '90s, there were essentially no good surgical options for these patients,” said Dr. Tim Nelson, who researches and conducts new HLHS treatments, “but a number of very innovative surgical techniques were developed that have allowed many of these children to survive and thrive."
The surgeries allow the children to live relatively normal lives, but because the right side of the heart is handling the tasks of both ventricles, it has been shown to weaken with age. This would normally require the patient to undergo a heart transplant later down the road, but researchers think an infusion of cord blood could solve the problem by making the right side of the heart two times to five times stronger.
“We're finding ways of inventing new therapies to make that right heart stronger by stimulating the growth of the heart muscle and make the five-horsepower engine, a 10-horsepower engine, a 50-horsepower engine,” said Dr. Tim Nelson. “And if we make it strong enough, we believe that that has a shot at delaying and preventing transplant for a significant number of these children."
Andrea and Heath Sexton found out their son Ryals would be born with HLHS during one of their routine ultrasounds.
"We were wondering how is this going to change our lives ... Obviously, the care of a child that possibly would need a lot of help, maybe a lot of long-term help," said Heath Sexton. "And then, of course, in the back of your mind, obviously, you've read that a lot of children don't make it past three months. And, so, just thinking about, you know, am I going to be prepared ... for a funeral?"
The Sextons quickly put their child in the care of the Children's Hospital of Philadelphia (CHOP), one of the leading medical centers for HLHS surgeries and treatment. CHOP became one of a number of institutions who joined together to help expand access to this clinical trial, and the Sextons were the first family to undergo the treatment through CHOP.
After collecting the cord blood at the time of birth, processing it in Minnesota and cryo-preserving it for three months, the cord blood stem cells were thawed and infused directly into Ryals’s heart near the end of his second operation. In three more years, Ryals will undergo the final surgery. His family is just happy to have him home in Alabama and feel much better now that they are able to give some normalcy to Ryal’s life—and future.
Source: Mayo Clinic