OKC surgeon and researcher touches hearts of Iowa family
The name Harold holds a special place in the hearts of Christina DeShaw and her family of five.
It’s the middle name of her 4-week-old son, Miles DeShaw-Weitl. Her almost 4-year-old daughter, Ava DeShaw-Weitl, recently gave the name to a teddy bear she made for her new little brother.
The name Harold has almost superhero status in the family, and that’s because it belongs to Dr. Harold Burkhart, the man who helped save the lives of Ava and Miles and has treated them both for hypoplastic left heart syndrome, also known as HLHS.
“When you’re in the trenches and you know your child’s life hangs in the balance … when someone helps you through that, they become part of your family,” said DeShaw, of Clive, Iowa.
DeShaw first met Burkhart, medical co-director of the Children’s Heart Center and pediatric cardiothoracic surgeon with OU Children’s Physicians, shortly after Ava was diagnosed with HLHS at her 18-week ultrasound appointment. Thankfully, her twin brother Aidan DeShaw-Weitl did not have the defect. The twins were born May 8, 2012.
At the time, Burkhart was a pediatric cardiothoracic surgeon at the Mayo Clinic, based in Rochester, Minn. The family was so impressed with Burkhart, they decided to go to Mayo for Ava’s treatment.
HLHS and cord blood
HLHS is a rare congenital heart defect in which the left side of a baby’s heart is severely underdeveloped and unable to pump an adequate blood supply throughout the body. The defect occurs in about one in every 4,344 babies born in the United States.
Traditional treatment for babies born with HLHS involves three open-heart surgeries, typically performed within the first few years of life. The surgeries redirect blood flow through the heart. Often, heart transplants are required later in life.
Burkhart, in collaboration with the Mayo Clinic, is conducting clinical trials involving cell-based therapies for HLHS. The research includes using umbilical cord blood collected from newborns with HLHS. During the second of three surgeries, the baby’s own cord blood cells are injected into the heart muscle.
Burkhart said therapy has evolved over the past 30 years with dramatic improvements in surgical outcomes. But there are still issues, such as weak heart muscles, that cannot be fixed with surgery.
“We are now able to use blood cells from the umbilical cord of the baby to hopefully stimulate the heart muscle to grow stronger and multiply,” Burkhart said. “This is a new therapy in pediatric heart disease, and we are fortunate to be a part of the first clinical trial.”
While Ava is a part of the trial, she wasn’t a candidate for the cord-blood injection and has had only two of the three surgeries she needs. DeShaw said Ava needs to get stronger before her third surgery. Unlike Miles, Ava has had other health issues in addition to her HLHS diagnosis.
Miles, who was born at Children’s March 21 and had his first heart surgery soon after, likely will be a candidate for the cordblood injection. DeShaw said she’s thrilled her children are getting the treatment they need while also helping to improve treatments for others with HLHS.
“We were told there was probably a 3 percent chance we’d have another baby with HLHS after Ava,” DeShaw said.
Burkhart said the Mayo Clinic research lab processes the umbilical cord blood cells under the supervision of Dr. Timothy Nelson.
“While at Mayo, I was fortunate enough to work with Dr. Nelson and take part in developing some of the processes we are using today with these children,” Burkhart said. “This is truly a collaborative relationship in which patients from both institutions benefit from our relationship.”
That relationship coupled with Burkhart’s expertise made him the family’s first and only choice when Miles was diagnosed with HLHS in utero.
DeShaw wants families of children with heart defects to know there is hope — that the journey is hard, but it’s possible. She started a website and blog documenting her family’s journey.