Friday, February 26, 2010

"Johnny D."

Every hospital ward has stories of that one patient who gripped the hearts of the whole staff. In the pediatric ward aboard the USNS Comfort, that patient is a feisty little boy with no name, no known identity at all.

“He was dropped off at an orphanage after the earthquake. That’s all we know about him,” explains Navy nurse Susanna “Q” Sutherland. “And he was clearly not treated well.”

His skin was mottled. He had a huge tumor on his right eye and a white film over his left. His dental condition led doctors to believe that he was about ten years old, but he fit into size 3T clothes. He didn’t speak at first. “We all thought he was blind and deaf,” said, Sutherland, who was with him from day one and became one of his core group of substitute mothers.

He had to either be held constantly or not touched at all and he threw raging tantrums. “He was a wild man,” said Navy doctor Jeff Miles, describing a nearly feral child. “He wouldn’t eat or drink for three days. He had to be on an IV.”

Staff tried unsuccessfully to locate his family and eventually named him John Doe. The boy quickly became known as “Johnny D.”

Johnny’s tests revealed Xeroderma Pigmentosa—an extremely rare condition that renders skin incredibly sensitive to UV rays. This was also the source of the tumor covering his eye.

Change was incremental but steady. Project HOPE volunteer Carrie Alexander, a pediatric nurse practitioner and one of his caretakers, patiently sat with him during mealtime. The first time he ate, it was nothing but graham crackers-- for an entire week. Alexander and other staff supplemented his diet with Pedia Sure and taught him how to sit down at a table, drink from a cup, and leave unwanted scraps on a napkin rather than the floor.

Doctors operated on his tumor. Johnny’s right eye was removed in the process, but so was the growth on his face that nurses suggest might have initially scared other kids away.

As he became stronger, his outbursts became less angry and more playful. Staff began to swing by the ward on their hours off just to receive a Johnny D. fist bump—Haiti’s high five and Johnny’s signature greeting. Gifts of clothes, stuffed animals, even a red superhero cape began to pile on his bunk.

“The best part is seeing how he interacts in his environment,” explains Alexander, as Johnny raced back and forth across the room behind her pushing a wheeled stool with another little boy. “He plays with other kids now.”

Wednesday, Johnny was well enough to leave the ship for his new home: Mission of Hope for Haiti. The head of the Comfort’s medical mission, Captain James Ware, personally came down to the boat launch for a final hug.

During his ride to shore, he sat quietly in the boat, allowed a Dora the Explorer life jacket to be put on him. As the Comfort receded behind, Johnny made a round of the boat, fist bumping every passenger he could reach.

Story and photos by photojournalist and HOPE volunteer, Allison Shelley.

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