When Christopher Warren was in third grade, he was asked to write a story about something that happened in his life. And it wasn’t your average story.
Christopher, now 10 and a fourth-grader, wrote about his “head surgery” at St. Louis Children’s Hospital, the “good” doctor and why it was “so fun.”
Christopher has been in and out of hospitals since he was born and had already had eight different surgeries by the time he was 6, says his mom, Monica Warren.
"When I was pregnant with Christopher, my husband, Eric, and I were told everything seemed fine, and I had no problems during my pregnancy,” she recalls. “But just one day after Christopher was born, he was diagnosed with a bilateral craniosynostosis, which means the plates in his head fused together prematurely.”
The family’s pediatrician, who had not had a patient with this diagnosis before, was very proactive and immediately had Christopher visiting a number of specialists at several hospitals, including St. Louis Children’s Hospital. By the time he was 6 months old, Christopher also had a condition with his kidneys that required surgery at St. Louis Children’s Hospital; at 2, he underwent cranial surgery at St. John’s Medical Center; and several years later, he had eye surgery at St. Louis Children’s Hospital to correct a droopy eye condition.
When he was 5 years old, Christopher’s optic nerve was very swollen and looked odd, Monica says. He was also experiencing pressure in his head, which led to Christopher becoming a patient of Dr. Jeffrey Leonard, a pediatric neurosurgeon at St. Louis Children’s Hospital.
Dr. Leonard told the Warrens following a 24-hour observation in the ICU that Christopher would need to have a shunt placed in his head to alleviate the pressure. Although Christopher’s pressure was much higher than normal, he was not experiencing symptoms commonly associated with a high level like balance problems or eye-related depth perception issues, says his mom.
“I really fought the surgery,” Monica says. “I didn’t want him to have to go through another one, but since it’s been done, his quality of life really has improved.”
What made the surgery “so fun,” as Christopher described in his story, was that he got an orange Mohawk (thanks to the iodine that was needed for the surgery), an incision in the shape of a “C” for “Christopher,” and Dr. Leonard gave him a dollar for being so brave.
“Dr. Leonard has been an amazing influence on Christopher. He had already been through so much and didn’t like hospitals, doctors, nurses, anything about them,” Monica says. “Dr. Leonard really took the time to know Christopher and help all of us understand what he needed. They have a special bond, and although they argue and bicker, Christopher takes whatever Dr. Leonard says very seriously.”
As a teacher herself, Monica says she had to laugh when she read her son’s story. She says most kids wouldn’t think about a surgery as something they’d want to remember, but it made a difference to Christopher, and he gave Dr. Leonard the story as a gift to say thanks.
“I like Dr. Leonard because he’s funny,” says Christopher, who says St. Louis Children’s Hospital doesn’t feel like a hospital to him thanks to the people there.
Although the Warrens were told from the day Christopher was born that he would experience delays, Monica says that has not been the case. He’s a typical boy who loves baseball and playing golf with his dad.
And although it was disappointing to learn that he couldn’t play football or soccer because of the shunt, Christopher has accepted it because Dr. Leonard told him so.
“There has to be a reason all of this has happened. I know it sounds strange, but I would never have had Christopher born any other way,” Monica says. “Most of his surgeries took place when he was young, and he really doesn’t remember them, and the one that he does remember gave him a happy memory. This has been a journey for our family, but it’s been a blessing.
“Christopher is a very sweet, compassionate boy, and we’re so lucky to have him,” she says. “There are a lot of things we’ll never have answers for or understand, but I am OK with that.”
Today, the Warrens visit St. Louis Children’s Hospital once a year for an annual eye exam and to visit Dr. Leonard and check on Christopher’s shunt.
“When June comes around and it’s time to go back to Children’s, I get a little nervous,” Monica says. “Children’s will always be a part of our lives, and I know we always have someplace we can trust guiding us through what’s ahead.”
To read the story Christopher wrote, visit