A Special Gift

Published On 12/09/2015

Family honors son, Le Bonheur by giving back

Zachary Monaghan had a special heart but was determined to live a full life. His heart was, in some ways, an anomaly – holding some of medicine’s most complex conditions. But Zach’s family never let him think of it that way. God had made it special.

Zack running trackZach was born with a complex congenital heart condition and from an early age, doctors didn’t give Zach’s parents, Kelly and Chris of Tulsa, Okla., much hope for his survival. The couple continued to search for doctors who thought differently. After Cardiac surgeon Christopher Knott-Craig performed Zach’s first surgery at age 1, he thrived.

“He had a normal childhood,” said his dad, Kelly. “He played soccer, baseball, basketball and was active in Boy scouts. He never wanted people to have sympathy for him. He wanted to be like any other kid.”

By the time he was 15, Zach had joined his high school track and cross country team in Oklahoma.

Doctors were amazed that he was as active as he was – that his special heart could work so hard. He accomplished what many others with normal hearts couldn’t. Then, last fall, Zach began to notice his endurance level wasn’t what it had been before.

What followed were long discussions, and then a decision, to repair a leaking valve between two chambers of his heart.

They traveled to Memphis to see Knott-Craig, the surgeon who had repaired his heart so long ago.

“The expectation was he would be hospitalized for a week,” Kelly said. “We thought he would be able to run competitively in spring 2015. His goal was to run the 800 meters in under two minutes. The doctors were optimistic and excited for him.”

Zach ended up spending 31 days at Le Bonheur after a lengthy surgery and complications, an unexpected detour for a teenager during Christmas and new Year’s break.

“We never left Memphis,” Kelly said. “I made a promise to him that I wouldn’t leave him. And I didn’t.”

Family photo black crater trail

Throughout the stay the Monaghans became especially attached to not only Zach’s doctors and nurses – but also Child Life specialists Molly Pearce and Anne von Lanken who “went out of their way to make sure it was as pleasant as it could be,” Kelly said.

Child Life specialists are pediatric health care professionals who work with children and families to help them cope with the challenges of hospitalization, illness and disability.

“We just had a special connection with them and I think they saw in us how strong our family was and how much we cared about one another,” Kelly said.

Monaghan remembers one day when Pearce made special arrangements for Zach and his brothers, who had traveled from college in Oklahoma to spend the break with family. Zach received a new Xbox for Christmas, and the brothers wanted to play Halo 3. Molly quickly made arrangements for them to use the room of Magic, Le Bonheur’s movie theatre, to play the game together on the big screen.

“All the positive memories we provide in the hospital can help to wash away the harder ones,” Pearce said.

At another time, when the Harlem Globetrotters came to visit, von Lanken made sure they came by Zach’s room to visit. “We found it refreshing to have someone other than doctors and nurses to come in and be attentive to the needs of the child and the needs of the family,” Kelly said. “And that really had a lasting impression.”

Zach returned to school to finish his senior year of high school in the spring. But on a mountain bike ride during the spring Break family vacation in Arizona, Zach grew tired quickly.

senior picture of ZackTests back home in Oklahoma showed that his oxygen saturation numbers had dropped far below their normal range. He underwent another heart catheterization in spring 2015 – but as he continued to get worse, Knott-Craig called them back to Memphis for another surgery to replace the faulty valve.

“They admitted us in the same CVICU room. There was a lot of mixed emotions,” Kelly said.“We aren’t naive by any means. We are a very faithful family. We had a tremendous number of people praying for Zach– that he would come through this and God was going to heal him. We never thought we would leave Memphis without our son.”

In the weeks that followed, Zach underwent three open heart surgeries and two catheterizations, but his heart proved too weak. He died on June 27, 2015.

“My hope is that science continues to develop and that researchers continue to give hope to families,” said Kelly. “When you are told that your child has a severe heart condition, it takes your breath away.”

Kelly is also giving hope to those families through his work on the Thomas Eugene Bentley Foundation. Thomas Bentley was a long-time client of Monaghan who cared deeply for youth. He serves as a director – along with Bentley’s daughters – to the foundation.

The Foundation recently gave a gift to Le Bonheur designated for Child Life, a service that is not reimbursed by insurance but solely funded through the hospital.

“During the time we spent at Le Bonheur, we learned about the uniqueness of how the hospital was started and saw that it was providing a tremendous service,” Kelly said. “It’s just a way of being able to help the hospital and really help the Child Life program continue its mission – to provide help to children and their families during stressful times.”