Life with ‘the little warrior’ 19 months after encephalocele surgery

Owen Sheridan familyPhoto courtesy of Lorrin Sell

Nearly every morning in the quiet, early light, 19-month-old Owen Sheridan awakens not with a cry but with a steady, strong-willed yell, just to tell his parents he’s ready to begin the day.

“We will change his diaper and bring him into bed with us,” says Owen’s mom Jen Sheridan. “He will babble happily. And when he smiles, it is the sweetest thing.”

For the Sheridans, the smile is just one of the many miracles since Owen, the little warrior as they call him, returned home from Boston Children’s Hospital on Jan. 11, 2014.

Born with a rare growth called an encephalocele, Owen was given little chance of survival. During early development, fluid and tissue normally encased in the skull had seeped outwards forming a large mass on top of his head. The growth was so large—more than half his weight—the Sheridans weren’t able to hold him for the first four weeks of life.

Doctors at a hospital near their home in Pennsylvania had never seen an encephalocele case so severe. Because of its size and the amount of brain matter and blood vessels involved, surgery was too risky. The Sheridans were advised to arrange for palliative and hospice care.

Kevin and Jen began desperately searching for other options. Everywhere they went they were told surgery would be a death sentence. But Jen remembered a story she had read before Owen was born, an article about a boy whose encephalocele was removed at Boston Children’s Hospital. The Sheridans decided to contact Dr. John Meara, and Dr. Mark Proctor, from Boston Children’s Craniofacial Anomalies Program.

“They gave us confidence and put us at ease in taking on a surgery like this, which we knew in every way was life-threatening but at the same time was the only choice we had,” Kevin says.

On New Year’s Day, 2014, they set out on the nine-hour drive to Boston.

“We would have driven to the ends of the earth”

“Boston Children’s is a big place, but once you get your bearings, it actually feels like a small-town hospital; you don’t feel like a number,” says Kevin. “We felt important as parents and felt like we were really being listened to.”

Owen SheridanPhoto Courtesy of Tiny Toes Portraits – Children’s Photography Pittsburgh

The team from the Craniofacial Anomalies Program, led by Drs. Meara and Proctor successfully performed a lengthy and complicated surgery to remove Owen’s encephalocele and repair his skull, while carefully avoiding every blood vessel on Owen’s head.

“It is still shocking,” says Jen. “I said many times, ‘I can’t believe he’s 18 months. I can’t believe he is this. I can’t believe he is that.’ But now I can’t imagine him not being with us.”

Although his long-term prognosis is unknown, by all measures Owen’s progress is miraculous.

“It’s really hard to make sense of it when you study the anatomy of the brain. Everything in Owen’s brain is kind of misplaced, disorganized,” says Kevin. “There is no explanation as to why he is moving all four limbs, why he is able to grasp, why he is able to smile.”

“Boston Children’s is a big place, but once you get your bearings, it actually feels like a small-town hospital; you don’t feel like a number,” says Kevin. “We felt important as parents and felt like we were really being listened to.”

As Owen’s core strength improves, he is making strides. He isn’t able to sit up on his own, but he is able to hold up his head. And the Sheridans are in the process of getting him “a stander” to help him develop his leg muscles.

“He likes to be independent,” says Jen. “When he sits in the high chair, he has this proud smile on his face.”

“There’s so much he contributes to our family”

It doesn’t hurt that Owen has a cheerleader on the sidelines. His 3-year-old sister Aubrey hugs him every morning and likes to hold his hand. Although his sight is compromised, Owen responds to voices.

Owen5“He smiles when we talk to him, and he definitely responds when his sister sings to him,” says Kevin.

The Sheridans recognize Owen’s journey will be different—different from Aubrey’s. “He is not going to be this normal child running around,” says Jen.

She remembers when Owen was in the NICU. A doctor told her, “The brain is a miraculous thing. You never know the connections that will be made every day.”

Every day with Owen is a day they didn’t expect to have.

“We were really made to believe it was impossible, but now our whole family, our whole town has a different understanding of what is possible,” says Kevin. “It changes the way you look at the world. Hopefully, our story can be somebody’s hope when there doesn’t seem to be any.”

For more information, visit the Craniofacial Anomalies Program.