CHARLIE'S STORY

North Carolina needs a freestanding children's hospital for kids like Charlie.

17-year-old Charlie Humphrey’s health journey began before he was conceived.  

In 2009, when Charlie was only two, his late father Allen was diagnosed with colorectal cancer.  The Durham family later learned that Allen’s cancer was caused by a mosaic genetic mutation that causes familial adenomatous polyposis (FAP), a rare, inherited disorder characterized by the development of hundreds to thousands of polyps in the colon and rectum.

Sadly, Charlie’s dad died in 2012 after a brave fight. Charlie was just five years old, but Allen’s cancer set the course for Charlie’s future. 

Since those with FAP have a nearly 100 percent chance of developing colorectal cancer by their 20s, experts recommend that the children of those with the FAP mutation undergo genetic testing and their first colonoscopy by age 10.

One-by-one, Charlie’s older siblings were tested and cleared of the gene, until they got to the youngest, Charlie.

Charlie wasn’t that lucky – he had the FAP mutation.

To prevent cancer, the recommended course of treatment in children with FAP is to remove the colon. And while removing a child’s colon may prevent cancer, without highly specialized care, it can change the way they move through life.  

Fortunately, Charlie’s mom Robin is a nurse, and became a fierce advocate for him. She read case studies about children like Charlie, and knew that the surgery he needed would require a skilled pediatric surgeon and a program with the expertise and experience to give him the best chance at not only avoiding cancer, but living a normal life after the surgery.

Robin met with local surgeons, and was concerned not only with the surgeons’ approach but their lack of experience performing this surgery in children. She reached out to the Cleveland Clinic, which had an excellent FAP program. They referred her to a reputable program in the Triangle, but again, included doctors who cared for both children and adults with the condition. Robin wanted a focused pediatric program for her son.   

Ultimately, Robin’s research led her to Boston Children’s Hospital, who had the highly specialized expertise necessary to perform Charlie’s surgery with not just his life, but his quality of life in mind. However, her health insurance company wouldn’t cover the surgery there.

After many appeals, it wasn’t until her in-person hearing with the insurance company that they decided to cover Charlie’s care in Boston. Not because of the surgical skill required, but because there was no local hospital with a specific piece of necessary surgical equipment.

Although Robin was relieved that she could now take Charlie to Boston for his surgery, it meant that they needed to leave home for an extended period of time. Robin – a widow – had to take extended leave and move to Boston for weeks. The expenses were enormous. From airfare for appointments to extended-stay lodging – even a car that could handle the snow – the burden on the family was significant, but worth it to know that Charlie was in the best possible hands.

Right away, Robin knew she had made the right decision to fight for Charlie. From the moment she entered Boston Children’s, everything was designed just for kids. “Sick adults are scary, and in even the nicest pediatric programs that are part of adult hospitals, children still encounter them,” says Robin. From the décor to the furniture to the food choices and support teams, at Boston Children’s, like all freestanding children’s hospitals, every consideration is to meet the clinical and emotional needs of the children they serve – and their families. “It just felt softer. Safer,” Robin added.

Charlie’s surgeon also impressed Robin. “Every step of the operation was planned to ensure that Charlie’s body functioned outwardly like his peers. Initially, Charlie had a temporary colostomy bag, but his surgeon took a part of Charlie’s small intestine and created a pouch to do the job of the colon. He then gave Charlie instructions on how to expand it over time so ultimately, he could control his bowels once it was reconnected and the bag was gone.

Today, Charlie’s life is mostly like all his 17-year-old friends. He still faces a lifetime of surveillance to make sure he doesn’t get intestinal cancer, but Charlie’s mom credits his quality of life to the care he received at Boston Children’s.

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