Child with half a beating heart still ‘full of life’
For most children, going to preschool is no big deal. For Keaton Scoles, not yet age 5, completing a term of preschool is probably nothing short of a small miracle. It’s miraculous, according to Keaton’s mother, Diana, because Keaton has only “half a heart beating in his chest.”
Keaton was born with hypoplastic left heart syndrome (HLHS). This severe congenital heart defect occurs when the left side of the heart—the part responsible for pumping oxygenated blood into the body—is underdeveloped.
Until recently, a diagnosis of HLHS was tantamount to a death sentence. However, pediatric surgeons can help patients manage the disorder through a trilogy of surgeries. In his young life, Keaton has already undergone all three major heart operations. He had the first at only 6 days old—at Advocate Children’s Hospital in Oak Lawn, Ill.
The hospital is one of the country’s centers for treatment of HLHS. It treats 20 to 30 HLHS patients annually, making it a high-volume HLHS center nationally. Dr. Michel Ilbawi, chief of pediatric heart surgery at Advocate Children’s Hospital, has developed innovative treatment strategies for HLHS.
Diana says Keaton’s recovery has been smooth since completing his third surgery, the Fontan procedure, less than two years ago. “He is full of life and brings us joy daily,” Diana reports from the family’s most recent home in Arbor Vitae, Wis.
Although his corrective surgeries are completed, Keaton will continue to be seen about every six months at the HLHS clinic. There a team monitors him for any growth or other developmental problems, central nervous system complications and issues related to such basic functions as hearing and eating, says Dr. Tarek Husayni, pediatric cardiologist at the hospital.
“Not only has our focus been on decreasing mortality from HLHS, but improving a patient’s overall quality of life,” Dr. Husayni explains. “Twenty-five years ago, children did not survive this disorder. Now, patients are surviving. We established this [HLHS] clinic to address the specialized needs of this patient population.”
Diana Scoles is especially grateful to Drs. Ilbawi and Husayni; Angela Boomsma, nurse in pediatric cardiology; and all the Advocate Children’s Hospital staff members who helped her and son through a very difficult period.
During Keaton’s hospitalizations, particularly following his first heart procedure, Diana remembers standing next to her child’s bed, “praying that his nurses were doing everything they could possibly do and being compassionate towards my son. And, they were. I was able to concentrate on remaining positive, believing in miracles, the power of prayer and angels of healing.”
That “miracle” is now realized as Keaton continues to develop and enjoy his summer days. He will be returning to a preschool program in the fall and then kindergarten next year.
Keaton’s next visit to the HLHS clinic is in August, and, in September, the family intends to participate in the Advocate Children’s Hospital-Oak Lawn 27th Annual Pediatric Cardiology picnic.
“What is important to me in telling Keaton’s story is describing the emotions that we felt. New moms and dads [in similar situations] need to know that what they are feeling is normal and expected and that there is hope,” Diana says.
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