Fishers parents are grateful for the lifesaving care their little boy received.
By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org
Elijah Hill is holding court in a corner of the Simon Family Tower lobby, banging on a table, reaching for a cellphone and sharing his Cheerios.
The 17-month-old is vocal and social, charming everyone in his path.
It might seem unremarkable to the parents of most toddlers, but Elijah James (EJ for short) is remarkable indeed.
His parents, James and Lanita Hill, know it, and his care team at Riley Hospital for Children knows it for sure. Watching on this day while EJ scampered about were two of the pediatric intensive care unit physicians who took the lead on his care while he was hospitalized at Riley for two months in the fall of 2024.
Then just a newborn, EJ was transferred to Riley from another hospital after he suffered a bowel obstruction and lost a significant portion of his intestines, leading to what is often called short gut syndrome.
Lanita will never forget that ambulance ride to Riley, where every bump terrified her as she watched her infant son fight to stay alive. When they arrived in the PICU, she remembers Dr. Courtney Rowan attempting to calm her as the physician gave rapid-fire instructions to some 20 medical staff who had different duties but one goal – to save this baby.
“I was in a daze and thought my child doesn’t look like he’s going to make it,” Lanita said.
Critical care physicians Riad Lutfi and Michael Joe Hobson were among a half-dozen PICU doctors who followed EJ, in addition to a large contingent of residents who rotated through the PICU during the several weeks that EJ was there.
“Elijah experienced multiple gut-related infections and required high ventilatory support as well as renal replacement therapy and many days of deep sedation and paralytics,” explained Dr. Lutfi.
It was often touch and go, as EJ seemed to defy the typical course of treatment, the physicians said.
“He’s not simple,” Dr. Lutfi said. “He had a lot of complications … there were times when we felt defeated. We’d get one thing better and have another problem.”
But in addition to all of their medical knowledge, they had an ace up their sleeve – committed, involved parents who didn’t shy away from asking the tough questions every day.
“I feel like everyone was warned before they came into our room that we’re both going to ask you a lot of questions,” Lanita Hill said with a smile. “And they listened.”
That kind of input was invaluable, Dr. Hobson told the couple during their recent visit to Riley for a follow-up appointment with Dr. Charles Vanderpool and the GI team.
One of the realities of being an academic medical center is there are a lot of different providers, he said, and the parents are the one consistent voice. They know their child best, and if they’ve been involved with their care, they have learned things that can help in the course of treatment.
That might be input on how EJ responds to certain medications or how adjustments in position can smooth out his heart rate while weaning him off the ventilator.
“Honestly, the families here pick up on things really quickly, and they’re just as valuable a member of the team,” Dr. Hobson said. “We had the ICU team, the surgery team, GI, renal, pulmonary and infectious disease involved, but probably the MVP at the end of the day is these guys,” he added, pointing to EJ’s parents.
Being present at rounds every day was eye-opening for both parents. Lanita rarely left her son’s side, while James took care of the couple’s two older boys at home in Fishers and came to the hospital as often as possible.
“It was hard to hear their report many days because of how sick he was, but it was what we needed because we like to understand the science of everything,” Lanita said.
She and her husband both have multiple degrees – a bachelor’s in biomedical engineering and a master’s in public health for her, and a bachelor’s, master’s and doctorate in computer science for him.
They advocated at every point for their son, but they also were comforted by the feeling that the Riley team was with them every step of the way.
“The ICU doctors here, every single one of them, are amazing,” James said.
“But it wasn’t just the ICU, not just the nurses and doctors,” Lanita added. “It was Riley as a whole. They are really exceptional. Guest services, food services, they got to know us. They all really care.”
With the exception of a G-tube for medications, EJ is now free of all the medical equipment he once needed. He was able to come off TPN (IV nutrition) in September and loves to eat.
“He eats anything,” James said, as EJ munched on Cheerios and other snacks his mom packed for him. “He’ll take my sandwich, my doughnut. If you put food out, he’ll eat it.”
As Dr. Lutfi watched a healthy EJ try to share his cereal, he couldn’t help but smile, even as he had to rush back up to the critical care unit to see other patients.
“This is really why we do what we do,” the physician said. “I love being part of this team. We can talk to each other and talk to the parents and know their goals. We work together.”
EJ’s kidneys and lungs have recovered, and his intestines are working well enough as evidenced by his ability to eat, digest and grow. He continues to see the GI team at Riley.
“Everything seems to be going in the right direction,” James said. “You don’t realize how fortunate you are until you have to go through something like this, and to be able to come out on the other side of it … it brings new meaning to life.
“We’re just very thankful,” he added. “We are fortunate Riley is here. They were able to give us back our son.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org