“We really felt the love on the hardest night of our lives”

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

If you had told Scott and Lauren Whitaker last September that they would be taking their infant son to Disneyworld this week, they would never have believed it.

That’s because Charlie Whitaker had quite a rough start in life. Born with hypoplastic left heart syndrome, he had already undergone one open-heart surgery at barely a week old, before subsequently suffering cardiac arrest in his father’s arms and being put on lifesaving ECMO treatment at the bedside.

But today, 10-month-old Charlie is getting that Disney experience, that photo in front of the castle, those mouse ears, all before he’s old enough to remember any of it.

And that’s OK. The fact that Charlie is here now, happy and giggling, playing peek-a-boo and saying mama and dada, is a testament to the expertise of the Riley Children’s Health team, the commitment of his parents and the love and support of family and friends.

That family will be out in force Saturday for the annual Pediatric Critical Care Walk-a-Thon across from Riley’s Downtown Indianapolis campus. They are walking in support of the Riley Children’s Foundation, already raising thousands of dollars in donations and leading to little Charlie being named a champion for this year’s walk.

Joining the hundreds of people expected at Saturday’s event will be members of the PICU and CVICU teams, all of whom have had a hand in saving the lives of Riley’s sickest children.

Dr. Lee Murphy, who was staffing the CVICU on that September night in 2025 when Charlie suffered cardiac arrest, remembers the code blue call, the race around the corner to Charlie’s room and the look on the faces of the boy’s parents as he sprang into action, initiating chest compressions while directing others to prepare for advanced life support measures.

“Overall, it was great collaboration, starting with the parents,” Dr. Murphy said. “The physicians, surgeons, nurses, the operating room team, ECMO, advanced practice providers, pharmacy all helped pull Charlie through. The team effort was on full display.”

Scott and Lauren, who hadn’t even heard of hypoplastic left heart syndrome or ECMO a little more than a year ago, have become experts now after learning of Charlie’s condition during his 20-week anatomy scan in April 2025.

The Carmel couple sought out the experts at Riley after Charlie was diagnosed at another hospital. They met with cardiologists Dr. Andrew Rodenbarger and Dr. Anne Farrell, then heard stories about renowned cardiothoracic surgeon Dr. Mark Turrentine.

“We knew we were in the right place,” Scott said.

Charlie’s delivery last August at the Riley Maternity Tower went smoothly, and he was transferred to the cardiovascular intensive care unit in Riley’s Simon Family Tower in preparation for the first of three open-heart surgeries required to repair the severely underdeveloped left side of his heart.

All went well with the first surgery Aug. 25 when Charlie was a week old, until that fateful evening in early September when Scott was holding his son for the first time since the surgery (Norwood procedure).

“It all happened so fast,” Lauren recalled. “Charlie went sheet white, I blinked and then there were probably 25 nurses and doctors in the room.”

“All hell broke loose,” Scott said.

Within minutes, they were ushered out of the room into a nearby consult room, where a nurse spoke with them, and a chaplain soon appeared.

“He was like an angel,” Lauren said. “He had such words of wisdom during that time of uncertainty.”

Charlie remained on ECMO for six days, allowing machines to do the work of his heart and lungs and give his fragile body a chance to rest. He was discharged a few weeks later but was watched closely by Riley’s cardiovascular home monitoring team, led by Dana Hartman, until returning in March for his second open-heart surgery with Dr. Turrentine.

The couple leaned on each other, their faith and their family through the hardest days, but they count their blessings that Charlie was receiving the best medical care in those crucial minutes, as well as the hours and days that followed.

“ECMO saved Charlie's life,” Scott said. “He will always carry a large scar on his neck as a reminder of those six painful days, but without ECMO, he would not be here today.”

When they think back on those frantic moments, as doctors performed compressions on their son’s tiny chest to keep his heart beating, Charlie’s parents recall the confusion and the fear that they might lose their little boy. They also remember the love and compassion they felt that night.

“All the credit to the Riley team for having the plans in place to not only save him but make sure we were OK afterwards, too,” Scott said. “We did not feel like we were on this emotional island. Everybody absorbed it with us, which is pretty special.”

When they return to Riley now for outpatient appointments, they said they feel a sense of comfort rather than anxiety.

“You might think it would be traumatic, but it just feels welcoming and almost like we’re back at home,” Scott said. “That’s a testament to the team there. I don’t know that you would get that everywhere. We really felt the love on the hardest night of our lives.”

Dr. Murphy, who will attend Saturday’s walk, said Charlie’s parents were instrumental in his recovery.

“They were amazing. Always at the bedside, asking good questions, advocating on Charlie’s behalf,” he said.

“It’s because of kids like Charlie that those of us in the ICU get up and come to work at Riley – to take care of the sickest of the sick.”

Register for the Critical Care Walk from 8:30 to 9:30 a.m. Saturday (June 27) in the Simon Family Tower atrium. This year’s theme is “Our Champions Are Rock Stars,” and participants are encouraged to dress like a rock star or their favorite musical act. There will be a celebratory walk, games and a tribute for patients who have passed. Funds raised support critical care research at Riley.

Learn more here.