Community 'team' rallies around Stonington teen with rare disease

Stonington - In early February, 14-year-old Hannah Careb contracted what seemed to be a virus. She couldn't hold down food or water.

Strangely, there was none of the retching that typically goes with vomiting. Instead, the food or liquid would simply flow back out of Hannah's mouth as if her digestive system were running in reverse.

Within weeks she had dropped 20 pounds from her 115-pound frame, and doctors inserted a feeding tube through her nose, saying she had rumination syndrome and would never again be able to eat normally.

That was the start of a search for a cure that, because of her mother's determination, brought together a team to help Hannah get well.

Rare syndrome

At first doctors had been unable to diagnose Hannah's problem. The eighth-grade student at Mystic Middle School worried that her classmates would think she had an eating disorder or some type of psychiatric problem. It was difficult for her to go to school, and she began working with a tutor.

In March doctors diagnosed Hannah with the normally incurable rumination syndrome. Her only source of nutrition was the feeding tube while she slept. She couldn't even lick a lollipop.

The illness kept the family from eating meals together.

"It was frustrating. You see a feeding tube in your child's nose every day. She's trying to go to school, but she feels terrible," said her mother, Kate Careb.

Hannah saw doctors at Lawrence & Memorial Hospital, Children's Hospital Boston and Connecticut Children's Medical Center in Hartford.

At Kate Careb's insistence, a doctor in Hartford tracked down a possible treatment - at Nationwide Children's Hospital in Columbus, Ohio, which had developed a protocol that re-educates the body about how to eat and drink.

When Careb contacted the hospital, she learned that the first patients had been cured in just three weeks, but that it could take six to eight months for Hannah to be admitted.

"Ma'am, people go for years with this," a doctor there told her.

"I told him, 'That's not an option,' " Careb recalled last week.

Inspired to find a cure

The morning after talking to the Ohio doctor, Careb awoke at 4 a.m. with an idea: Why couldn't she put together her own team of professionals to follow the protocol with Hannah?

She woke her husband, Dan. "We can do this. It's not hard to do," she told him.

By 11 a.m., Careb, who is the vice president of advancement for Special Olympics Connecticut, had most of the team members. No one turned her down, and most provided their services for free.

"Had I actually stopped and thought about this logically - 'Can I pull together a team to cure my daughter?' - I wouldn't have done it," she said. "But sometimes the traditional route is not the only route. There are other options if you can be creative."

On May 23, the team went to work. At first it took Hannah 50 to 60 attempts to swallow a single Rice Chex square and keep it down.

Less than a month later she was cured.

Learning to eat

Last week, in her Lamberts Lane home, Hannah made a bowl of rice noodles for lunch and ate while she talked.

"I feel really good," said Hannah, who will be a freshman at Stonington High School later this month. "These people who helped me were all really amazing. They were just a gift."

Naturopathic physician Dr. Jonne Groves of Madison, who had treated Hannah in the past, led the team. She talked to Hannah every day, sometimes for lengthy periods. She had known about Hannah's illness and was hoping the family would call her.

"I was champing at the bit to help her. She's such a great kid," Groves said.

Because the protocol involved round-the-clock care in a hospital setting, Groves said it was important that Hannah have similar attention.

Careb told Groves that she had lined up people, including neighbors, to be with Hannah all day.

"Everyone wanted to help," Groves said. "They all said, 'Let's give this kid her life back.'

"Without every little piece in place, I'm not sure we'd have been able to accomplish this."

On the team were a physical therapist, chiropractor, dietitian, hypnotherapist, recreational therapist, cognitive behavioral training expert, an artist and two people who kept Hannah involved in activities such as French cooking, shopping and volunteering once a week at Apple Rehab in Mystic.

Hannah started by trying to swallow one Rice Chex square. The protocol requires patients to swallow regurgitated food until it stays down. At first she had to re-swallow up to 60 times before she was successful.

One therapy that especially helped was diaphragmatic breathing - expanding the abdomen so the diaphragm can move down and create more room for the lungs to expand. The technique helps promote relaxation. Painting or holding a conversation kept Hannah distracted while she ate. Intensive neurotraining helped her visualize food going down her esophagus and into her stomach and staying there.

One week into the protocol, the family was faced with a dilemma. The hospital wanted to begin testing Hannah.

"I said, 'Do I pull apart a team I really believe is working well?' " Careb recalled. "I went with my team."

Working with the team

Hannah began most days down the street at artist Natalie Bartholet's house. They would do diaphragmatic breathing, stretching and painting, some of which involved her perception of rumination.

During that time she would eat her breakfast of one Rice Chex square.

Bartholet told Hannah that if she really wanted to beat this illness she could.

"It was a wonderful experience just to be small part of this. I just loved it," she said. "It was a gift for me."

Lunchtime would be spent with neighbor Marci Bayer. They would practice breathing, play Yahtzee and talk while Hannah would eat her lunch of one Rice Chex square.

It was 10 days before Hannah could swallow the one square on the first try and keep it down. Each of the meals was eaten at traditional mealtimes, but she still required supplemental nutrition through her feeding tube at night.

Some days Hannah would cook French food, learn to speak French and practice photography with Neil Evans, who also worked on her breathing.

Chiropractor John Flaherty identified an old whiplash injury that was likely the culprit of headaches Hannah had been having for the past year. One theory is that rumination syndrome can follow an earlier traumatic injury.

While volunteering was not part of the Nationwide Children's Hospital protocol, Pat Varholy, a retired special education director and longtime friend, offered to take Hannah to visit residents at Apple Rehab.

"It was a good time for her to learn to give back while she was receiving so much from so many people," Varholy said.

"She's really benefited by seeing other people in need. The people we visit look forward to us coming. I've loved working with her. She's a wonderful young woman."

While working with dietitian Rosemary Gentile, Hannah decided to become a vegetarian and found ways to include enough protein in her diet.

After she could eat one Rice Chex square, Hannah progressed to two and then three. She added a few shreds of carrot and a drop of hummus. Then came a few blueberries and small orange slices.

On June 24, just 33 days after the team began its work, Hannah went to Groves' office and had her feeding tube removed. She is now back up to her normal weight and is working with a tutor so she is ready to start high school in a few weeks.

Lessons learned

Careb said she's learned much from the experience besides being creative in finding a way to heal her daughter.

"The biggest message is how extraordinary this community is," she said. "We have wonderful people who actually care about the health and well-being of people."

Careb said it also helped to look at the big picture.

"We were lucky. We knew Hannah would survive this. There are people that get diagnosed with much worse problems," she said.

Hannah said the experience was hard but "a lot of positive things ... came out of it." She continues to volunteer at Apple Rehab and now dreams of becoming a doctor.

In a recent letter to those who helped Hannah, Careb wrote:

"We had accepted the illness as a tough reality. We lived it and we hated it. What is so unreal is that a small group of people, some who barely knew us, came together and took their time and energy to just TRY to help her! I can't even write that without tearing up. The marathon is over. Hannah won. We all won."

j.wojtas@theday.com