April 6, 2018

Hearts of strength

Story and photo by Airman Michael Murphy
11th Wing Public Affairs
(U.S. Air Force photo by Airman Michael S. Murphy)
Jack, age 3, son of Capt. Kyle Kramer, 1st Helicopter Squadron helicopter pilot, plays with his toys at home in North Beach, Md., Feb. 5, 2018. Jack has survived three open heart surgeries after being diagnosed with hypoplastic left heart syndrome. HLHS is a congenital heart condition that does not allow proper flow of blood from the heart to the body.

She heard the dull and tiresome beep from a heart monitor as she lay in a dark hospital room March 12, 2014, in the Southeast Alabama Medical Center in Dothan, Alabama. Light cut into the room as the door opened and a doctor walked in, waking her and her husband, Kyle Kramer.

The doctor informed them their newborn son, Jack, was in worse shape than they thought.

“The doctor had tears in her eyes. She told us she had a bad feeling about (his heart),” said Robyn Kramer.

That night, the doctor called in an echo cardiogram technician to perform a scan that revealed Jack had hypoplastic left heart syndrome, a congenital condition causing the heart to improperly pump blood to the body. Their son was going to need at least three open heart surgeries.

“I remember asking her straight up, ‘Is he going to die?’” Robyn said. “She had the saddest look on her face, and she said she didn’t know. That was a question I continued to ask constantly of the doctors, and always got the same sad face.”

From that day on, she and her husband, Capt. Kyle Kramer, now a 1st Helicopter Squadron pilot at Joint Base Andrews, Maryland, found themselves fighting a battle to fix their baby boy’s malformed heart. And to make it more difficult, the diagnosis came as a surprise.

“I had all of the proper prenatal care,” Robyn said. “There is no history of heart disease in our family. The second he came out, the doctor hadn’t even cut the cord yet, and he said ‘Something is wrong with him.’”

The nurses and doctors originally told them the problem was Jack’s lungs. He was taken to the neonatal intensive care unit at the SAMC and was projected to return to his family about 12 hours later. Kyle and Robyn felt there was no need to worry.

After additional testing at SAMC, they decided to send Jack to Children’s of Alabama hospital in Birmingham.

“They ended up flying Jack out (to Birmingham) because they couldn’t take care of him,” Robyn explained. “We went down to see Jack one last time and the flight nurse was putting him onto a stretcher. She told Kyle to kiss him goodbye, and I started crying.”

In the coming months, Jack received multiple heart surgeries beginning at Children’s of Alabama hospital and ending at Boston Children’s Hospital in Boston.

By the time Jack was 2 years old, he had received medical operations costing more than $2 million.

Kyle, a prior Air Force combat controller, said his previous military experience helped him tackle the issues his family was facing.

“You can sit and wallow in self-pity or you can pick yourself up and continue on,” Kyle said. “We did everything we could. We brought him to the hospital as the best option that we had at the moment, and there was nothing else but to have faith that he would come out fine. That kept me going, and I never worried about him dying.”

The Kramers didn’t have to go through it alone. Kyle and Robyn said they received overwhelming support from his leadership and unit and remained resilient and hopeful in the face of Jack’s rare heart condition. Anytime Jack was in the hospital, Kyle was released to go take care of him.

“I know that no matter what happens, his work lets him go when it’s needed,” Robyn said. “I don’t know if there would be any other job that would be so cool with it. It’s so funny, because Kyle was two weeks from separating years ago, and he got picked up to be a pilot. If we had any other job, things would be so different.”

And it wasn’t just colleagues and leaders. Kyle said the kindness received from others made an unforeseen impact in his life.

“I will forever be in their debt,” Kyle said. “That has been the most humbling thing I have come across. It’s when they say ‘Go take care of your kid’ and that’s it. I don’t even know how to say thank you.”

Robyn said Jack has far exceeded the medical standard set by doctors for children with HLHS for intellectual development and physical growth.

“He just got cleared a month ago for the first time ever,” she said. “He doesn’t have to go back to the cardiologist for one year, and before that it was every three months.”

The Kramers have taken up the task of making others aware of the rare heart defect by maintaining a social media presence about Jack and his heart defect.

“They appropriately went all in,” said Maj. Katy Tenpenny, a helicopter pilot instructor at Fort Rucker, Alabama, while Kyle was there (now the Air Force District of Washington chief of helicopter operations at JB Andrews). “First is understanding and taking care of him, so I think that was their immediate thought, but I think they are also trying to raise awareness.”

With his health now better than ever, the Kramers have high hopes for Jack’s future and what he will accomplish.

“He is going to go to Harvard,” Kyle said with a grin. “Harvard is the medical school for Boston Children’s Hospital, so all his doctors are from Harvard. We always joke that he is going to end up back there.”

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