A four-year old Dexter girl continues to defy all odds and improve after undergoing her third heart surgery in October 2021.
Rylee Howard, the daughter of Jody Howard of Dexter and Jacinda Burgnere of Gideon, was born in 2017 and was diagnosed at birth with Hypoplastic Left Heart Syndrome, or HLHS.
HLHS is defined as a group of defects of the heart and large blood vessels. Approximately one of every 960 babies born in the U.S. has the condition. With HLHS, most of the left side of the heart is small and underdeveloped, affecting the mitral valve, the left ventricle, the aortic valve and the aorta itself. The condition prohibits oxygen-rich blood to be properly distributed throughout the body.
Rylee underwent two heart surgeries by the age of four months. The third surgery in October presented a significant risk. Rylee’s initial cardiologist had proposed a procedure called a Norwood Glenn Fontan. In layman’s terms, Rylee’s father explained the procedure would reroute everything from the left side of the heart to the right side due to the left side not developing properly during pregnancy.
The cardiologist who planned the procedure, however, relocated to Texas, and Rylee’s new doctor proposed an alternative surgery.
While the previously proposed surgery came with a number of possible risks – including potential damage to Rylee’s vital organs and a possible limited life span, the newly proposed surgery offered significantly fewer risks to include greater mobility, improved development milestones and most importantly, a probable longer life span.
The new procedure would basically “redo” what was done in the first two procedures and would, in a best case scenario, give Rylee a “near normal” heart.
The procedure was not entirely without risk, however, Howard explained. Rylee’s doctors described the surgery as a “high risk, high reward” procedure.
“The procedure itself carried more risk, but the benefits were greater,” Howard said.
“She could be given more opportunity to develop and could have years added to her life.”
After several consultations, it was decided Rylee was a good candidate for the purposed procedure.
Rylee was taken into surgery at 7 a.m. on Oct. 19, 2021, at Children’s Hospital in St. Louis.
“Rylee’s heart was stopped and connected to a bypass machine which did the work for her heart during surgery,” her father explained. “Her heart was on bypass for five hours.”
Howard noted that doctors typically prefer a patient not exceed a period of two hours on bypass. He did not see his daughter again until 9 p.m. that night.
“Prior to the procedure, Rylee had a one-ventricle heart, and now she has a two-ventricle heart,” Howard explained. “Her oxygen level rose from the mid-70s to the mid-90s.”
Howard explained that prior to surgery, Rylee was taking in only about one quarter of a normal breath of air. Following the procedure, her oxygen levels rose to a near normal level.
Howard said the hospital treated Rylee and her family very well, explaining that once an hour during the surgery, he would get a call updating him on how the procedure was progressing.
Additionally, Howard credited the Dexter School District with being “beyond helpful” during Rylee’s hospital stay. The district, along with Dexter’s Autry Morlan Chevrolet dealership, sent supplies, gift certificates to restaurants and fun activities for Rylee and her family.
Rylee stay in the hospital was expected to be six to eight weeks. However, no one told Rylee about that expectation. Defying the odds again, she was home in three weeks.
Howard explained that there was a complication when Rylee’s breathing tube was removed.
“The removal caused some damage to the left vocal cord, and the doctors said it could be six months before she spoke if it healed on its own. We were told surgery to correct the injury may be needed as well if it did not heal.”
Once again, no one told Rylee of that possibility. She was speaking a week after returning home.
Rylee attends Dexter Public Schools and to aid in her development, she receives speech therapy sessions from Belinda Worley of Bootheel Pediatric Therapy in Dexter. She also takes both physical and occupational therapy. She attends early childhood development at Southwest Elementary and is instructed by Kim Williams.
In the event of an emergency, a G-Tube remains in place for Rylee to receive nutrition directly to the stomach.
“She can eat soft or pureed foods,” Howard says. “She is still having trouble chewing due to the texture of the food. She wants to put different foods in her mouth. She likes potatoes in gravy, French fries and ketchup, and she likes to try to bite down on crackers, though she then needs to get the cracker off her tongue. She knows what to do as far as biting down, and it’s only a matter of time before she will be chewing.”
Rylee is still learning to form some words vocally and is able through voice and hand gestures to let her father know her needs. She does not yet have the strength in her legs to walk, but she is able to stand for short periods of time. She is steadily gaining weight, and when not utilizing a wheel chair, she “scoots” to navigate her household.
The procedures Rylee has undergone are still relatively new, so long term studies of those who have had them is still ongoing, Howard says.
“The recent surgery will give Rylee a better quality of life and may have added 10, 15 or 20 years to her life,” her father notes.
“A heart transplant is possible in the future, but because Rylee’s heart has been on bypass as much as it has, there is a chance she may not be a candidate for a transplant.”
In the meantime, Rylee continues to spread joy and inspiration to those around her.
“I’m thankful for every day I have with Rylee,” her father said.