Ryan and Kristen Koppel couldn’t agree on baby names. Before they even got pregnant, they started kicking around a few, but none sat quite right with both of them. That is until one evening at church when they heard the name Caleb. They looked at each other at nearly the same moment and said that if they ever had a boy, that would be his name.
The years went by and Kristen became pregnant—with twins. At their 16-week appointment, they found out Twin A was a boy and cheered, “It’s Caleb,” recalls Ryan. Their excitement grew as they learned Twin B was also a boy.
Then, as the appointment continued, the doctor took what felt like hundreds of photos of Twin A’s heart.
“Finally I just asked if everything was alright. The doctor told us he’d talk about it in a little bit,” says Ryan. “It was the longest stretch of life I can remember.”
The doctor soon told them that Caleb had Hypoplastic Left Heart Syndrome (HLHS). He said that things could be done for children with HLHS, but that Caleb’s condition would require multiple open-heart surgeries and the Koppels would need to have the twins at a hospital with specialized care.
“You just kind of walk out of that [kind of] appointment shell shocked. You start Googling things,” says Ryan. “I also started looking up what Caleb’s name meant, and in many translations, I found out that it means ‘whole-hearted.’ I just wondered what was going on; we have this whole-hearted name, but half-hearted diagnosis.”
Getting Care for Caleb
The Koppels researched and toured numerous pediatric heart programs before choosing Children’s National Health System. Mary Donofrio, M.D., director of the Fetal Heart Program within the Children’s National Heart Institute, performed a fetal echocardiogram, confirming that Caleb had a very small, dysfunctional left ventricle requiring three major heart surgeries to live.
“Hypoplastic Left Heart Syndrome is a rare congenital heart defect in which the structures on the left side of a child’s heart are small and underdeveloped,” says Dr. Donofrio. “The most critical issue with the condition is that the heart’s left ventricle, or bottom chamber, is very small or absent and cannot pump enough blood to other parts of the body. We needed to monitor Kristen and the twins closely until they were born, and Caleb would need surgery in his first few days of life.”
In mid-February 2014, Caleb and Jonah made their debut at Washington Hospital Center. While Kristen and Ryan cuddled little Jonah, Caleb was immediately surrounded by a half dozen doctors and transported to Children’s National.
When Caleb was just six days old, Pranava Sinha, M.D., a cardiac surgeon at Children’s National, performed the first surgery, called the Norwood procedure.
“The surgery took about 6 to 8 hours. We were so thankful he was alive, but he had a rough day and recovery,” says Ryan. “They had to wait 10 days for the swelling in his chest to go down so they could close it.”
Caleb’s recovery continued to be slower than the Koppels and his care team had hoped for. He suffered a variety of setbacks over the next few weeks, including strokes, seizures and a scare that they might have to amputate his foot, but his family and his team never gave up or lost hope. With persistence, he turned around and made a complete recovery.
At 4 months old, Caleb had his second surgery, called the Glenn procedure.
A Brother’s Love
“Jonah was always a little bit ahead physically and psychologically when they were younger, but Caleb would watch him, and it seemed to help push him along,” says Ryan. “By 18 months old, Caleb could walk on his own. He just skipped crawling, and went from sitting and scooting to walking all over the house.”
As the twins grew, they became more inseparable. Jonah even started sneaking into Caleb’s room at night and climbing into bed with him. The twins received ‘big boy’ beds so they could sleep side by side.
Their bond grew even stronger after Caleb’s third surgery, the Fontan, in April 2016.
“We packed our car with stuff to stay for two months, but things were completely different this time,” Ryan recalls. “He had his heart surgery, and we were home just eight days later.”
Today, Jonah, Caleb and their younger brother, Micah, are constantly wrestling, throwing balls, tackling each other and playing sports at their Leesburg home. The fact that they can all do it together, with Caleb often leading the pack, is just incredible, says Ryan.
“We just feel so blessed to be with him every day, watching him do the things 3-year-old kids should be doing. Despite all he’s been through, he’s 100 percent caught up. It’s amazing, and we are grateful for all of the doctors and nurses who helped us get here,” says Ryan.
While Caleb may have only been born with half a heart, he and his family are unmistakably living life wholeheartedly.
