Published date: March 03, 2023
Ben Keller and his son Locke, 4, do not share DNA. Still, they share many other things that strengthen their bond as father and son - a love of family, a passion for soccer and a heart for championing Arkansas Children's Hospital (ACH), where they receive treatment for congenital heart defects.
Ben and his wife, Mandy Keller, adopted Locke following his birth in Texas on Nov. 11, 2018. He was diagnosed with a congenital heart defect, Tetralogy of Fallot, just six hours after birth.
For Ben, it was a familiar story — and possibly fate.
"I told Mandy, 'Maybe this is why we have him.' I know everything he's going to experience and everything he's going through growing up as a kid with a congenital heart defect," Ben said.
Keller, 34, had his first surgery in 1989 at ACH in Little Rock for coarctation and bicuspid aortic valve when he was just 36 hours old.
"It is a narrowing of my aortic arch. Rather than having three flaps on my aortic valve, I only have two," Ben explained, adding his second surgery was at 4 years old. "My first two surgeries were open chest and involved patching my aorta with Gore-Tex wraps to help widen and maintain a proper shape."
Ben continues to have cardiac catheterizations, including when ACH surgeons placed one of the first pediatric aortic stints in him at just 12 years old. His last catheterization was December 2021.
When the Keller’s adoption caseworker called about Locke, their first call was to Arkansas Children’s Hospital nurse practitioner Candace Campbell, who Ben regularly saw for appointments with Adult Cardiologist Tanmay Bhamare, M.D., in the adult congenital heart disease program. Campbell now works at Arkansas Children’s Northwest in Rogers. She put the couple at ease, explaining more about the condition.
"After talking with her, it made us feel more comfortable taking this on knowing that we had support from Arkansas Children's Hospital," Ben said, with Mandy adding, "We already knew that Arkansas Children's is top-notch for heart care. We weren't concerned about that. But it was important hearing the reassurance from someone who manages that kind of care."
Markus Renno, M.D., M.P.H., F.A.A.P., F.S.C.M.R., cardiologist and director of advanced cardiovascular imaging at Arkansas Children’s Hospital and assistant professor of Pediatrics and Radiology, Pediatric Cardiology and Pediatric Radiology Sections at the University of Arkansas for Medical Sciences, met the Kellers just a few months after joining ACH. Locke was one of the first patients he referred to ACH for heart surgery.
"I love Locke's zest for life. He has so much energy and curiosity about the world around him," Renno said. "His parents are both educators and have done a wonderful job of creating an environment that enables him to learn and thrive. I am amazed at his parents."
Though Locke was born at another hospital out of state, it was never a question he’d be receiving lifelong care at Arkansas Children’s like Ben.
"They have been treating and caring for children with congenital heart defects for decades. They have been doing this for so long, and doing it so well, they branched into care for a pediatric heart patient who has grown into an adult. They created a subspecialty for it, the adult congenital heart disease program, and they're the only ones in the region that can provide me with that care. Even though I'm not a kid anymore, they still want to be there to care for me throughout the rest of my life. I know they want to care for Locke for the rest of his life, too," Ben said.
Tetralogy of Fallot is one of the most common congenital heart defects seen at the Arkansas Children’s Heart Institute. It is a complex condition that impacts how blood moves through a baby’s heart, consisting of four different heart problems:
Locke’s most significant issue was repairing his pulmonary artery and valve.
Renno said Tetralogy of Fallot causes oxygen levels in the body to be low.
"This is because the obstruction of flow to the lungs causes some of his blue blood to cross through a hole between the pumping chambers of the heart, from the right side to the left side," Renno said. "His surgery closed the hole and relieved the obstruction of blood flow to the lungs."
Locke had his first open heart surgery on March 5, 2019, at just under 4 months old led by Lawrence Greiten, M.D., pediatric cardiothoracic surgeon at Arkansas Children’s Hospital (ACH) and assistant professor of Surgery at the University of Arkansas for Medical Sciences (UAMS). Brian Reemtsen, M.D., assisted with the surgery, explaining Locke had obstruction at three levels — the pulmonary arteries, the pulmonary valve and below the pulmonary valve.
“He was younger than most of them that we do,” said Reemtsen, director of the Arkansas Heart Institute, chief of cardiovascular surgery at ACH and professor of Surgery at UAMS.
Reemtsen removed Locke's pulmonary valve, the only valve a person can live without. However, Renno said most require valve replacement later in life, something Locke will likely need in about five to 10 years.
"The cath lab can do a pulmonary valve implant by putting a needle in the vein and actually putting the valve up through there and then blowing a balloon up to place the valve instead of open-heart surgery," Reemtsen said. "The good news is children can have a valve replacement without another invasive surgery."
At seven months, Locke had a second surgery on June 28, 2019, after his pulmonary arteries failed to grow, causing a re-obstruction that was uncommon. Reemtsen performed his second surgery and said the Kellers were "great with the medical team," amid the high-risk procedure.
So far, Locke has had two catheterizations to balloon his pulmonary artery to help prevent narrowing.
Mandy said her son loves showing off his scar and learning more about his heart procedures and how the human body works.
"I bought him a very basic book about the human body. One of his favorite pages is the one about pumping blood. It's all about how the lungs and the heart work together. He likes to follow the trail of where the blood goes when it leaves the lungs, how it then goes to the heart and back to the lungs," she said. "We talked about how his artery walls are thick, and he said, 'Oh, yeah, because it doesn't pump blood fast enough.' So, he's starting to understand his condition and is very interested in it."
In the fall, The Arkansas Children's Foundation selected Locke Keller as a 2022-2024 Arkansas Children's ambassador. The family will participate in speaking engagements, fundraising and sharing their experience with Arkansas Children's. It's a perfect role for the gregarious Locke, who stays active by tap dancing his favorite "silly dance" to playing for the Little Rock Rangers Soccer Club, enthusiastically shouting "Go Rangers!"
"He is a natural-born performer. He has never met a stranger. And he tells it how it is with a lot of dramatic flair," his mom said with a laugh. "I don't think I've ever seen a kid with as many best friends as he does. He connects well with people."
Ben added that his son has a lot of love in his heart for everything.
"The other day, he just curled up on the couch with our cat and one of our dogs. He just stroked their heads, saying that he has the 'best animals in the world,'" Ben said.
For the Kellers, sharing the mission of Arkansas Children’s is a way to give thanks and spread the message of hope for other families.
"It means everything to us because it's just one little way for us to give back to a hospital that's given so much to us. I don't know if we'll ever be able to repay what Arkansas Children's has done for us, but this is a small thing that we can do to promote the hospital, the doctors and the nurses. It's our opportunity to do something for this institution that has made our family a family," Ben said. Mandy added through tears, "A healthy family."
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