Congenital Diaphragmatic Hernia: Jackson's Story
Patient Story Highlights
- Jackson was born with congenital diaphragmatic hernia (CDH) – a hole in the diaphragm that results in abdominal organs migrating up into the chest – choking off lung growth.
- Despite the odds, Jackson survived thanks to the highly-skilled team at the Center for Congenital Diaphragmatic Hernia at Johns Hopkins All Children’s Hospital, with a survival rate exceeding 90 percent.
- At 2 years old, Jackson is thriving, completely off oxygen and meeting or surpassing many of his developmental milestones, despite his challenging start in life.
Jackson has just turned 2.
With blond locks and impossibly blue eyes, he is, as his mom describes him, “all boy.”
“He likes to play rough. … He loves to be chased. He has boundless energy,” says Jackie.
Jackson’s favorite toys? Things that move. Planes, trains and automobiles.
The irony of that is not lost on his mom, as one of Jackson’s earliest experiences would have him “on the move” in a most dramatic fashion.
Jackson was born with congenital diaphragmatic hernia (CDH) – a hole in the diaphragm that results in abdominal organs migrating up into the chest – choking off lung growth.
Nationally, the survival rate for these babies who need ECMO (extracorporeal membrane oxygenation—a form of continuous heart-lung bypass) is 50 percent. But at Johns Hopkins All Children’s Hospital, the survival rate looks quite different. Patients treated at the Center for Congenital Diaphragmatic Hernia under the direction of David Kays, survive at rates exceeding 90 percent.
Two Years Ago
When Jackson’s mother learned her child would be born with CDH, she did her research, and chose Kays and his highly-skilled team to treat her baby. They put a comprehensive plan in place that included Jackie and her unborn child relocating from Baltimore to St. Petersburg a few weeks before the baby’s birth.
Jackson had a different plan. He came six weeks early, entering the world on Feb. 27, 2018 — as expected, fighting for his life. His lungs were failing, and he was placed on ECMO.
But this mom had made a decision about where she wanted her baby to receive care, and she wasn’t about to give up on it. She reached out to Joy Perkins, nurse coordinator on Kays’ team. Could they possibly come to Baltimore and get him?
“I didn’t know how you transport such a sick baby,” Jackson’s mom says. “But if it was safe and if it was possible, I wanted to do it.”
Kays and his team had not done such a transport before, and few in the medical establishment would attempt it. But they believed strongly that they could make a difference for this child.
“It felt like … we are just going to keep taking steps further than anybody else, because we believe in the survivability of these kids, and we’re willing to make the effort to show it … to do what it takes,” Kays says.
For a time, the logistics felt almost insurmountable. Within just a couple of days, they would need to locate a suitable plane and have it medically outfitted to transport a sick and fragile baby on ECMO. They would need to assemble a travel team — including Kays, Michelle Chadbourne, ARNP, respiratory therapist Dean Shepherd and perfusionist James O’Brien.
These four, along with two co-pilots and an astonishing amount of medical equipment — would cram into a small Cessna Citation and fly into Baltimore early that Sunday — just as a Nor’easter was making a howling exit.
“It was a mixture of excitement and anxiety,” says Kays, looking back on this event, exactly two years ago. “Excitement that we could go to such lengths to help this baby, but anxiety that it was possible things might not go well.”
The team arrived at the University of Maryland Medical Center and was greeted by a supportive medical staff. Still, they would proceed to overcome one challenge after another … from reconfiguring the ECMO circuit to factoring in different medications Jackson was on to trying to keep his body temperature and other vitals stable as they transported him in near-freezing temperatures from the tarmac into the tiny plane.
That evening, baby Jackson would make his first flight — in the belly of a Cessna — to St. Petersburg, Florida, and to Johns Hopkins All Children’s Hospital.
Jackson was in good hands. In the following days, he was weaned off ECMO, and Kays performed a successful surgery to repair his diaphragm. Each day, he got a little stronger. After seven weeks, it was time to go home.
“At the end of the day, this was absolutely the right choice,” Kays says. “We knew we could give Jackson a much higher chance of survival. I would make the decision again in a heartbeat.”
At 2 years old, it would be hard to observe Jackson and believe he had such an exceptionally challenging start. He is thriving. Although his lungs are still small, he is completely off oxygen and meeting or surpassing many of his developmental milestones.
“I look back in awe of what he overcame. It’s just unbelievable,” Jackie says. “I feel like it was 100 percent meant to be.”
How will this mother explain to her child this extraordinary first chapter of his life?
“Until he has questions about his scars, I won’t make a big deal out of it,” she says. “But I have a scrapbook of articles and memories ready for him when he asks. I want him to understand his own strength, and the power of his own story ... and just to live his very best life, whatever his path is supposed to be.”
For Jackson, the sky is the limit.
Johns Hopkins All Children’s Center for Congenital Diaphragmatic Hernia
At the Johns Hopkins All Children’s Center for Congenital Diaphragmatic Hernia (CDH) in St. Petersburg, Florida, families find hope during a time that may otherwise feel hopeless. Led by CDH expert David Kays, M.D., our team combines compassionate care, innovative techniques, and cutting-edge technology and equipment to treat babies with CDH.