When their teenage son Felix was diagnosed with Gardner syndrome, a condition that causes tumors to grow in the colon and rectum and nearly always leads to colorectal cancer if not treated, Beatriz and Luis of Caracas, Venezuela, looked all over the world for a place that could provide him with the best care.

And, like so many families facing a diagnosis of a rare disease, they found hope at Children’s Hospital of Philadelphia (CHOP). The family arrived at CHOP in December 2011, and just a few days later, pediatric surgeon Peter Mattei, MD, removed Felix’s colon and rectum during a complex, seven-hour surgery.

Some patients who have this type of surgery require an ileostomy, an opening surgeons create in the abdomen for waste to pass through. In Felix’s case, Mattei was able to avert the need for an ileostomy by using part of Felix’s small intestine to create a pouch that would allow him to pass waste through his anus.

The surgery, called a proctocolectomy with ileo-anal reconstruction, is also used to treat ulcerative colitis, a type of inflammatory bowel disease (IBD). Surgeons at CHOP often perform these surgeries using minimally invasive techniques, which allow patients to recover faster and with less pain.

Helping Felix's family get needed services

Before coming to CHOP, and throughout their month-long stay in Philadelphia, Felix’s family worked closely with Ivelisse Lopez-Ruiz, one of the Hospital’s access coordinators with International Patient Services.

Lopez-Ruiz arranged for interpreter services, helped the family find lodging — they stayed at a hotel near the Hospital and at the Ronald McDonald House in Camden, NJ — and coordinated all the details of their stay and of Felix’s treatment for Gardner syndrome.

“Ivelisse helped us with everything,” says Beatriz. “She always checked up on us and made sure she knew how we were.”

In many ways, Luis says, their trip to Philadelphia was almost like a vacation. They traveled to New York City, made many good friends and visited CHOP’s Snowflake Station, a toy shop that the Child Life, Education and Creative Arts Therapy Department set up in the Hospital for the holidays. Families were invited to come to the Snowflake Station to select gifts, free of charge, for their inpatient children.

Follow-up care for Felix

Felix will continue to be followed by his doctors in Venezuela, where he will receive regular checkups and endoscopies. If more advanced care is needed, his dad says, the family will return to CHOP.

“At CHOP, they are attentive not only to the patient, but also to the family,” says Luis. “This is the best we’ve seen — and we’ve seen a lot.”
 

Originally posted: October 2012