Healing Jack’s Heart and His Family
Nine-month-old Jack, awaiting a heart transplant, was in too much pain to sleep. His heart condition had caused serious, painful gastrointestinal problems. His mom, Rachel, had been up all night trying to soothe him.
Lanie Berk, MS, CCLS, a certified Child Life specialist, offered a familiar, friendly face. She held Jack close. She sang to him and read his favorite books.
“There are so many negative touch experiences in a hospital — needles, countless procedures and tubes hooked up to a child,” says Berk. “It’s so important to give positive stimuli in the form of touch that nurtures and heals.”
Jack fell asleep in Berk’s arms, giving Rachel a much-needed break. “It’s a privilege to be part of their story,” says Berk, who Rachel reports is pretty much her son’s favorite person in the hospital. “For a mom to trust me to hold her baby so she can leave for a little while is a huge honor.”
Jack was in heart failure when he arrived at Children’s National Hospital by emergency helicopter transport in February 2024. He was 4 months old. Our cardiologists diagnosed him with dilated cardiomyopathy, a condition that causes the heart chambers to thin, stretch and weaken. On Valentine’s Day, Jack’s family learned he would need a heart transplant to survive.
“We were shocked and overwhelmed,” Rachel says. She and her husband Brandon began alternating care for their baby in the hospital and their 2-year-old son Nolan at home.
In April, surgeons installed a ventricular assist device to help Jack’s body pump blood while he waited for an organ donor. But there were complications. His stomach swelled, and he had two strokes. “We quickly learned that Children’s National is an exceptional place with exceptional people,” Rachel says. “There were moments when we fully wanted to panic. Instead, we learned to breathe deeply and trust the care and our team.”
That trust and human connection, along with clear, thorough communication, helped make the hard times easier, Rachel says. Throughout the family’s long stay in the hospital, they received healing support from members of our Child Life and Integrative Care Services team.
Rachel says her son always had a great smile; but at the start of his hospitalization, it was subtle, and sometimes he could lift only one cheek. One week post-transplant, Jack’s smile was even. Now, his mom reports that he has a roaring belly laugh. The summer after his transplant, he is working to sit up and enjoys stroller rides. “Our team at the hospital taught me to be a little more spontaneous and celebrate the good moments,” Rachel says. “I’m more likely to go outside and play with the boys now, even if there are chores to do. I’m more about thriving in the moment. Children’s National gave Jack the ability to live a life. We’re here to enjoy every minute of it.”
Lanie Berk, MS, CCLS, a certified Child Life specialist, offered a familiar, friendly face. She held Jack close. She sang to him and read his favorite books.
“There are so many negative touch experiences in a hospital — needles, countless procedures and tubes hooked up to a child,” says Berk. “It’s so important to give positive stimuli in the form of touch that nurtures and heals.”
Jack fell asleep in Berk’s arms, giving Rachel a much-needed break. “It’s a privilege to be part of their story,” says Berk, who Rachel reports is pretty much her son’s favorite person in the hospital. “For a mom to trust me to hold her baby so she can leave for a little while is a huge honor.”
Jack was in heart failure when he arrived at Children’s National Hospital by emergency helicopter transport in February 2024. He was 4 months old. Our cardiologists diagnosed him with dilated cardiomyopathy, a condition that causes the heart chambers to thin, stretch and weaken. On Valentine’s Day, Jack’s family learned he would need a heart transplant to survive.
“We were shocked and overwhelmed,” Rachel says. She and her husband Brandon began alternating care for their baby in the hospital and their 2-year-old son Nolan at home.
In April, surgeons installed a ventricular assist device to help Jack’s body pump blood while he waited for an organ donor. But there were complications. His stomach swelled, and he had two strokes. “We quickly learned that Children’s National is an exceptional place with exceptional people,” Rachel says. “There were moments when we fully wanted to panic. Instead, we learned to breathe deeply and trust the care and our team.”
That trust and human connection, along with clear, thorough communication, helped make the hard times easier, Rachel says. Throughout the family’s long stay in the hospital, they received healing support from members of our Child Life and Integrative Care Services team.
Rachel says her son always had a great smile; but at the start of his hospitalization, it was subtle, and sometimes he could lift only one cheek. One week post-transplant, Jack’s smile was even. Now, his mom reports that he has a roaring belly laugh. The summer after his transplant, he is working to sit up and enjoys stroller rides. “Our team at the hospital taught me to be a little more spontaneous and celebrate the good moments,” Rachel says. “I’m more likely to go outside and play with the boys now, even if there are chores to do. I’m more about thriving in the moment. Children’s National gave Jack the ability to live a life. We’re here to enjoy every minute of it.”
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