by Brooke Buchanan
Jillian Harlow, of Marietta, was born May 10, 2017 with half a heart. Despite this, she isn’t letting it stop her.
Jillian was born with Hypoplastic Left Heart Syndrome (HLHS), which is where the left side of a heart is undeveloped. “In Jillian’s case, her left ventricle is under developed and she also has aorta stenosis and mitral stenosis, meaning both of them are extremely underdeveloped as well,” Jillian’s mother Deanna Harlow said.
HLHS is an extremely rare heart defect, and there is no cure for it. “They are working on different studies to see if any of the HLHS patients have anything in common. Right now they are mainly trying to see if any of these patients have any kind of genetic malformation in common,” Harlow said. “Although some genetic disorders give kids a higher risk of developing HLHS, Jillian genetic testing came back completely normal.”
Jillian’s parents became aware that something was abnormal with her heart during the 28 week ultrasound. “We were referred to Nationwide Children’s cardiology in March of 2017. They did a fetal echo, and that is when we were told she had HLHS,” Harlow said.
According to the Center for Disease Control and Prevention, approximately 940 babies are born in the United States each year with HLHS. HLHS effects every person differently. “Ideally kids would go through all three surgeries and then have to have a transplant later in life. Some kids make it into their teens while others make it much later into life,” Harlow said. “The statistics for surviving HLHS are very slim though. Sixty-five percent of kids with HLHS never celebrate their first birthday.”
With Jillian’s case being so complex, the Harlow family was told that there was nothing that could be done. They were told to take Jillian home and let her spend as much time with her family and friends as possible. “They didn’t give us a timeline, so we set goals. We set our first goal as May. May is important, because Jillian turns one and that is a huge deal,” Harlow said. “We also chose May because we want to take her brothers to Disney, and we want Jillian to be there with us.”
In addition to going to Disney World, Jillian will also be traveling to Boston in May to explore the possibility of doing a left ventricle repair to her heart. “If Jillian is a candidate, they will start reconstructing her left ventricle while we are there. This will hopefully give her two working ventricles again. Right now, she is referred to as a single ventricle patient,” Harlow said.
The doctors will also try to open up the pulmonary veins on the left side of her heart. By having Pulmonary Vein Stenosis (PVS), Jillian’s veins are underdeveloped and they can collapse in some cases. “She also has a condition called left Pulmonary Vein Atresia. This means the blood is not flowing to her left lung. Due to the Pulmonary Vein Atresia and the PVS, she is no longer a candidate for a heart transplant or the third surgery for HLHS,” Harlow said.The first surgery for HLHS is conducted around five days old, and the second is completed around four to six months of life. The third, if Jillian were a candidate, would be completed between the ages of two and four.
After May, Jillian’s parents want her to continue to grow and age another year. “We were told that there would be no promising anything. Her heart is weak and you can only stretch a weak heart so far,” Harlow said.
Jillian loves watching “Frozen” and “Moana.” She also likes to sit in her bouncer seat and kick her legs, as well as go on stroller rides. She also loves watching her two brothers, Bryson and Cayson, play. “They always know how to make her smile,” Harlow said. “She is a special little girl and she has brought so much joy to so many people.”
To follow Jillian’s story, like “Jillian’s Journey” page on Facebook.