Tuesday, May 2, 2006

Digestive disorder makes mealtimes tough for girl

Published Tuesday, May 2, 2006

For $10 million, would you eat the same thing every day for the rest of your life?

  • Photo: Ana Maria Bennett, 2, smiles for the camera in this photo taken last week. Ana Maria, who suffers from a digestive disorder and gets most of her calories and nutrients through a feeding tube, weights just over 25 pounds.
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When a friend posed this question to me long ago, I answered yes with barely a moment's hesitation. I often eat the same foods for breakfast and lunch anyway, so for $10 million I was sure I could deal with an even more monotonous meal plan.

But last week, as I listened to Emmy Bennett describe the plight of her 2-year-old daughter, Ana Maria, who's been plagued with an eating disorder since birth, I silently changed my answer.

Ana Maria spent the first two years of her life unwilling to eat. Her parents and doctors were dumbfounded, and a gastric feeding tube inserted in the little girl's belly button gave her all her nutrients.

In February, after much hand-wringing, praying and fundraising (including more than $100,000 chipped in by an anonymous donor), the Bennetts, who live in Okatie, brought Ana Maria to the Kennedy Krieger Institute in Maryland, which specializes in treating pediatric feeding disorders.

Slowly, they began teaching Ana Maria how to eat. She spent hours with therapists and specialists who introduced foods into her diet one by one. Her parents, Emmy and Shey, rejoiced with every bite.

But then the allergic reactions started, and one by one, the foods were taken away.

"It was a Catch-22 because it was exciting to see her eating," Emmy says of the eight weeks Ana Maria spent at the facility, "but it was heartbreaking because she kept having all these allergies."

Doctors believe Ana Maria has an eosinophilic disorder, which is caused by an overabundance of eosinophils, a type of white blood cell. The body dispatches eosinophils to attack foods to which a person is allergic. Too many eosinophils mean too many toxins are released, causing inflammation and tissue damage.

And Ana Maria has a lot of food allergies.

Doctors hope to determine soon whether the digestive disorder affects her stomach, small intestine or esophagus. It can be treated with steroids, but Ana Maria's young age makes that too risky.

So while the Bennetts wait for her tummy to heal, Ana Maria can only eat three hypoallergenic foods -- pears, apples and squash. All must be pureed or in juice form.

As the eosinophil levels in her tiny organs decrease, her appetite increases -- but not for pears, apples or squash.

"She doesn't want it anymore," Emmy says of the ultra-restrictive diet. "She wants what the kids are having -- chips and cheeseburgers."

The Bennetts have three older children, ages 4, 7 and 10. The oldest two are homeschooled by Emmy. It's a lively household, and mealtimes are tense.

"She cries a lot at dinner. It's hard. I can't not let the other kids eat," Emmy says. "We usually feed Ana Maria before we eat, and we try to distract her with something. I ask the kids not to talk a lot about their food at the table."

But as Emmy is realizing, food is not just a means of sustenance. It's the way we socialize.

"Every family gathering centers around food. On Thanksgiving, I want her to have turkey," Emmy says. "... No birthday cake and ice cream. It's just hard."

A mother always wants what's best for her child. When all but hope is stripped away, that wish is simply for life. For so long, Emmy and Shey were desperate just to know what was wrong with their little girl. They prayed for someone to step in and save her.

Now that doctors are closer to pinpointing the problem, Ana Maria's future is finally coming into focus, which brings waves of relief and sorrow for her mother. The secret desires that a mother's heart dare only whisper before are now loud and clear: Emmy wants Ana Maria to enjoy a normal life, one where she isn't fed through a tube all day, every day.

But there is no cure for the disorder, and Emmy is unsure whether Ana Maria will ever be able to lose the feeding tube. An endoscopy in May will hopefully tell the Bennetts whether the doctors' diagnosis is correct. After that, they will begin the difficult task of trying to find more foods Ana Maria can eat. They'll introduce one new food into her diet every two weeks, to see how she handles it.

Right now, though, her mouth is weak from not having had enough opportunity to chew. So Emmy and Ana Maria work on the oral exercises the therapists at Kennedy Kreiger showed them. For a treat, Emmy freezes apple and pear juice to make popsicles for the toddler.

But the real treat comes next week, when the family heads to Disney World. Emmy has been on the phone making plans with several of the chefs at Disney's resort restaurants.

When Ana Maria and her siblings dine with Pooh, Donald Duck and Mickey, the littlest Bennett will be treated to one-of-a-kind meals, lovingly prepared by complete strangers.

"They're actually going to make her apples, pears and squash, as creative as they can," Emmy says.

It will finally make a little girl smile at dinnertime. But even more than that, it will warm a mother's heart.

For more information about Ana Maria Bennett or to help with her mounting medical bills, go to www.helpcureanamaria.com.

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