Jenny and David King wanted to bring their newborn son, Everett Josiah Killian King, home. Born prematurely and diagnosed with a rare and fatal genetic disorder, he only had days to live. Jenny’s heart told her to ask the care teams at Monroe Carell Jr. Children’s Hospital at Vanderbilt, “Can we take him home?” Her brain said it was illogical and not possible.
Born with an acute form of trisomy 18, or Edwards syndrome, Everett could not breathe on his own, and his condition was too severe to intervene. In trisomy 18, a baby is born with three copies of chromosome 18. Characteristics of the disorder include congenital malformations, developmental and motor disability, and health problems, including multiple organ abnormalities. The syndrome is rare and usually fatal before age 1.
“In thinking through all the decisions you don’t ever want to make for your child, I asked the team, ‘This is going to seem really crazy, but can we take him home?’” Jenny recalls. “We thought, ‘His whole life can’t be at Monroe Carell. He’s supposed to have a life outside the hospital.’”
“And they said, ‘Oh, yeah. That’s not crazy at all. We do it all the time. We will take care of it, and we’ll get him home.’”
Since Vanderbilt launched the Monroe Carell Neonatal and Pediatric Transport team for premature and critically ill infants and children 50 years ago in August 1974, not only have the team and number of transports grown, but so have the types of transports they perform daily. One such service is back-transports, when a stable child or infant is no longer critical and can continue to heal at a hospital closer to their home and community.
In 2023, the team also added an ambulance specially equipped for the transport of patients on ECMO, or extracorporeal membrane oxygenation, a life-sustaining mechanical system that temporarily takes over for the heart and lungs of critically ill patients. Monroe Carell became the first pediatric transport team in the state to offer ECMO transport for its patients.
Another service area is end-of-life transports, if a family like the Kings makes that request.
“If that is the decision they’ve made and want to be home, we work to provide that for them and help fulfill that wish to be home with family,” said Rachel Harvill, respiratory therapy for the Neonatal and Pediatric Transport team. “It can be very emotional, but we realize how important that is, and we work very closely with our Pediatric Palliative Care team to make that happen.”
For Everett’s ride home to Murfreesboro, Tennessee, the transport team included an EMT, a respiratory therapist and a nurse. “They even let both of us ride with him, and Dr. Tracy Hills (Palliative Care) and a resident followed behind in a car,” Jenny said. “It just meant the world to us. To be able to bring him home, even just for a few moments, was hugely important for us.”
Tracy Hills, DO, director of Pediatric Palliative Care at Monroe Carell, said helping families achieve end-of-life goals is critically important.
“When we have a patient where the family wants to go home for end of life and needs ambulance transport home, we immediately ask our transport team for assistance. Our transport team does an incredible job helping these families reach their goals at end of life,” Hills said. “Jenny and David had specific plans for how they wanted to use the time at home with him, and it was all photographed by a friend who was a professional photographer. It was really special to witness.”
Jenny and David’s families were present as well as the family dog. They carried Everett throughout his home, showing him his bed they had prepared for him and his mom’s massive garden. Having never been outside, they let the sun shine on his tiny face. Everett passed away a short time after arriving home on March 13, 2019.
They continue to share his story in hopes of not only educating health care teams on the importance and impact of helping a family achieve end-of-life transport, but also to encourage families to ask the question, if it is right for them. Everett now has a little sister, Shiloah Evelyn Rone King, 2, who gets to know her brother through videos and photos.
“David and I are shepherds and stewards of his story,” Jenny said. “For other families who walk similar roads, I want them to know they are not alone, and that someone else has been here and that they can ask questions. There is hope and joy amid great pain and sorrow.”
