Colon surgery wasn’t the Christmas present Rebecca and Jason Tomasulo had in mind for their daughter Savannah, but it was the only gift the 7-year-old wanted.
“The first time I met her, she said to me, ‘All I want for Christmas is for you to take my colon out,'” said Dr. Aaron Lipskar, chief of pediatric surgery at Mount Sinai Beth Israel.
“You don’t usually hear that from a 7-year-old,” he said.
But he soon learned Savannah is no ordinary kid.
At 2, the rambunctious toddler began to suffer extreme stomach problems — including constant diarrhea and bleeding.
Her mom Rebecca knew it wasn’t normal, but it took several meetings with doctors to diagnose Savannah with ulcerative colitis.
The disease causes severe, chronic inflammation of the bowel. The lining of Savannah’s colon and rectum was pocked by painful ulcers.
The family went through nearly five years of trying everything medically possible to alleviate the aggravating condition, said Rebecca.
But their daughter grew thinner and thinner, unable to eat with any gusto and drained by her body’s fight with the constant inflammation.
“We tried to control it with diet, we gave her medicines, actually every type of medicine known to treat this disease,” she said.
“It was very hard, and in the end, nothing was working,” the mom said.
By last year, Savannah, then 7, had gotten thoroughly sick of her finicky colon.
Worse, all of the treatments she’d been given over the years stopped working — including the feeding tube her family used in extreme flareups to get liquid nutrition into her weakened body.
“She couldn’t keep anything down – she would throw it up even from the feeding tube. She was scary skinny,” her mom said.
Based on a recommendation from another doctor, the family turned to Mount Sinai’s Dr. Marla Dubinsky.
Not only was she chief of pediatric gastroenterology at Kravis Children’s Hospital, but she was also co-director of Mount Sinai’s Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center.
Dubinsky took one look at the frail but determined girl and knew surgery was the solution.
“In some (ulcerative colitis) cases, surgery is the right choice. Some people look at it as the end of the road, but in reality it can be the best option,” said Dubinsky.
She called Lipskar on his cellphone, and he came right over to meet Savannah, who immediately told him she wanted her colon out.
“Children tend to be very resilient and Savannah was a real role model. She was in tune enough with her body to know she had reached the end of the road with treatments,” said Dubinsky.
“She got tremendous relief from knowing there was hope for her and that she’s going to be have a normal life. It’s fabulous,” the doctor said.
Savannah had her sickly colon removed on Dec. 19, four days after meeting Dubinsky and Lipskar.
She made it home by Christmas Eve and hasn’t looked back since.
“I’m happy … (surgery) was excellent. I eat nonstop … (mostly) soup and vegetables,” Savannah said Thursday from her upstate home.
After surgery the tiny patient drew Lipskar a picture: a colon, with a big red slash through it.
With her body no longer fighting constant inflammation, her youthful energy has returned along with her long-lost appetite.
“For now, we’ll let her thrive through the important years of childhood growth,” said Lipskar. “But in the future, we will be able to do a reconstruction, and everything will be fine.”
