Maxwell’s Story: Postnatal Repair and Care for Congenital Diaphragmatic Hernia

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Chris learned his wife, Jolin, was pregnant during his fourth military deployment in Iraq. He was ecstatic at the news and flew an American flag in the cockpit of his aircraft during a combat mission in honor of his expectant son, Maxwell (Max). That flag now hangs in CHOP’s Newborn/Infant Intensive Care Unit to honor the care team’s heroic efforts for infants and provide hope for families whose children are cared for there.

Maxwell and his dog Max, age 9, pictured with his best friend, Gunner at home in Florida Chris, an officer and pilot for the U.S. Air Force, was on his fourth combat deployment in Iraq when his wife, Jolin, learned she was pregnant with their first child. Ecstatic at the news, Chris flew an American flag onboard his AC-130U aircraft during a combat mission in Iraq in honor of his expectant son.

Jolin was 30-weeks pregnant when Chris finished his combat tour and re-deployed home. Shortly after his return, an ultrasound revealed that the fetus had a left-sided congenital diaphragmatic hernia (CDH). In essence, there was a hole in the fetus’ diaphragm. The intestines and spleen had moved through that hole in the diaphragm and up into the fetus’ chest, compressing his lungs and making it hard for them to grow and fully develop.

The couple was devastated at hearing the news but committed to finding the most professional and experienced care so their child would have not only the best chance of survival but also the best chance to thrive after birth. Through online research, they learned that Children’s Hospital of Philadelphia (CHOP) was “the best place in the world for CDH,” recalls Jolin. They promptly contacted a representative from TriCare, their military health insurance company, and coordinated a referral to CHOP for an immediate evaluation.

Jolin will never forget their first meeting with the CHOP fetal team.

“It was phenomenal and put Chris and I at ease,” she says of her full-day evaluation at CHOP. “Everything was pretty seamless. Leaving the facility, we felt like a great weight had been lifted off our shoulders and that our son had a great chance of survival.”

Birth in the SDU, surgery and care in the N/IICU

The family relocated from Florida to Philadelphia and stayed at the Ronald McDonald House, conveniently located near CHOP. This provided CHOP’s fetal team the ability to properly monitor Jolin and the unborn baby for the rest of the pregnancy.

Maxwell (who goes by Max) was born at 36 weeks’ gestation in CHOP’s Garbose Family Special Delivery Unit (SDU), the world’s first delivery unit in a freestanding children’s hospital specifically designed for healthy mothers carrying babies with prenatally diagnosed birth defects. The SDU keeps mother and baby together and gives newborn infants immediate access to an expert neonatal team without the risks of transport.

During Max's delivery, his heart rate dropped quickly so the doctors rushed Jolin and Chris into the adjacent operation room, where they delivered Max via C-section. CHOP’s Neonatal Surgical Team — the first-ever surgical team to specialize in the care of babies born with conditions that require surgery after birth, particularly CDH — stabilized Max. After two hours of waiting, Jolin, Chris and their extended family finally met baby Max in Jolin’s room in the SDU. Jolin and Chris were unable to hold Max as he had tubes and wires attached to him, and nurses had to whisk him off to CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) quickly after meeting his parents.

Maxwell holding a lizard in his hand Max had surgery at just 4 days old for CDH At four days old, Max underwent surgery to repair the hole in his diaphragm. For Max’s procedure — and all postnatal surgical repairs of CDH at CHOP — the entire care team came to his bedside in the N/IICU rather than transporting him to and from the operating room. This innovative standard of care ensures the utmost safety for these fragile CDH newborns.

Max, like many newborn infants with CDH, struggled with reflux and pulmonary hypertension at first. However, after six weeks in the N/IICU, he was discharged home. His parents were so grateful for the professional and personalized care he received at CHOP that they framed the American flag Chris had flown in Iraq and presented it to the N/IICU team prior to departing. This frame hangs in the N/IICU to this day to provide ongoing inspiration to both the neonatal team and other families going through similar hardships.

The family is grateful to CHOP’s doctors and nurses for the special care they received while spending three months in Philadelphia. CHOP will forever hold a special place in their hearts.

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