Former OL resident has half a heart but he leads a full life
To put it bluntly, the odds were good that Keaton Scoles would be dead by now.
There is no way to sugarcoat it. This former Oak Lawn resident was born with hypoplastic left heart syndrome and that’s something that Advocate Children’s Hospital officials say that until recently it “was tantamount to a death sentence.’’
He’s a kid with a half of a heart and he’s had three open heart surgeries before he turned three.
Some area friends and neighbors may remember in 2011 when Scoles was just one-year-old, his family hosted a yard sale to help raise money for his medical bills and people rallied around the family, raising $2,000 for the cause.
Not only is Scoles still alive, he “is full of life and brings us joy daily,” his mother, Diana, told Children’s Hospital officials.
The family moved from Oak Lawn to Plainfield and is now living in Arbor Vitae, Wis., where he completed a term of preschool, which Children’s Hospital officials call “probably nothing short of a small miracle.’’
Pediatric surgeons have perfected palliation of the disorder through a trilogy of surgeries. In his young life, Scoles already has undergone all three major heart operations – the first when he was only six days old – at Children’s Hospital.
Officials say the hospital treats 20 to 30 HLHS patients annually, making it a high-volume HLHS center nationally. Dr. Michel Ilbawi, chief of pediatric heart surgery at Children’s Hospital, has developed innovative treatment strategies for HLHS.
Diana says Keaton’s recovery has been smooth since completing his third surgery, called the Fontan procedure, more than a year-and-a-half ago. Although his corrective surgeries are completed, Keaton will continue to be seen about every six months at the Children’s Hospital HLHS clinic.
A multidisciplinary team will monitor Scoles 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 Advocate Children’s Hospital.
“Not only has our focus been on decreasing mortality from HLHS, but improving a patient’s overall quality of life,” Husayni said in a news release. “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.”
After trying for eight years to have a baby, being told she would never be able to carry term, and then experiencing the joy of reaching 20 weeks of pregnancy, Diana, then 42, was at first devastated and “depressed,” when an ultrasound showed her unborn child had a life-threatening heart defect.
Then she met with surgeon Ilbawi, and his team.
“Everyone sounded so positive and certain of our baby’s outcome, that we were put at ease,” she said in a news release.
The next months became what Diana calls “extremely overwhelming, especially after being told our baby would need heart surgery days after he was born. All of the normal thoughts of having a baby – what diapers to use, what bottles to buy, breastfeeding -- gone. Only one thing became a priority and that was living. I just wanted our baby to live.”
She said she would stand next to Keaton’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.”
Scoles will be return to a preschool program in the fall and then kindergarten next year.
He will be back in Oak Lawn in August for a visit to the clinic and he and his family plan to participate in the Advocate Children’s Hospital 27th Annual Pediatric Cardiology picnic in September.
“What is important to me in telling Keaton’s story is describing the emotions that we felt,” Diana said. “New moms and dads [in similar situations] need to know that what they are feeling is normal – and expected.”