Toddler to have delicate head surgery in Little Rock

LITTLE ROCK - When Teresa Zagal saw her baby for the first time, she screamed, "Get that thing off her face!"

That was before she got used to the sight of a lymphatic malformation growing out of Evelyn's neck like a second head. Now that she and husband, Carlos, have traveled from Rockford, Ill., to Arkansas to let a team of the nation's top vascular surgeons try an all-day operation, Teresa's perspective has changed.

"This is Evy; this is her," the doting mother says, reaching out at the bag-like structure hanging off the left side and back of 2-year-old Evelyn's neck, weighing down her daughter's head. "She claps on it. You kiss it. I'm going to miss it."

The mixed emotions are understandable for a 21-year-old woman who has seen doctors baffled by her baby's condition, who had resigned herself to accepting it after four unsuccessful operations in Rockford and Chicago. She didn't count on finding Dr. James Suen and his protegee Dr. Lisa Buckmiller at Arkansas Children's Hospital - specialists who weren't intimidated by the sight of her child and are ready to remove as much of the growth as possible Friday.

"I had a good feeling about it as soon as I met them," Teresa said Thursday, as she sat on the floor of an extended-stay apartment in Little Rock, cleaning out a tracheal tube inserted into the few square inches of Evelyn's neck not engorged with aberrant lymph nodes. "The way they discussed it as a team, and the way Dr. Suen said he had seen worse cases than our daughter."

Suen has received international attention for his work with children's hemangiomas, arterio-venous malformations on adults and for coming to the aid of future President Clinton's raw throat when he was on the 1992 campaign trail.

"It's not the worst I've seen, but it's among the largest," Suen said. "It's very extensive, the way it wraps behind on the entire head."

Teresa's sister Sylvia saw a special presentation about Suen's Children's Hospital team on Discovery Health television, but the Zagal family needed a little more help to make the connection.

"She said there was this Dr. S. from a state with the letter A," Teresa said. "I said, 'That doesn't help me, Sylvia!' Luckily, one of the nurses in Chicago said she saw something similar on Discovery Health, and I got the info off the Internet. Then, Dr. Suen talked to me. Usually, the doctors don't want to talk to anyone except another physician."

Suen says it's the least he can do for someone who has searched so long for answers.

"We usually recognize that we're at the end of the road for these patients," Suen said. "They're frustrated after running into so many walls elsewhere, so we spend more time with them."

Suen specializes in long procedures and delicate work with veins and arteries. He says Evelyn's case should be easier than some because it involves fewer arteries. The angry lymphatics, however, do mesh with several key veins, compress Evelyn's trachea and tongue and threaten critical nerves. And keeping the bleeding down will be all the more important with a baby, for whom a half-pint of blood is worth 2 pints for an adult.

For her part, Teresa has few delusions about what this surgery can do. She knows, for instance, that the malformation has spread into Evelyn's chest and she'll need almost yearly surgery in Little Rock to keep the lymphatics under control.

She also knows Evelyn isn't crawling or walking yet because she likely has brain damage that has little or nothing to do with the lymphatic malformation. Even if Friday's surgery is a complete success, only time will tell if she can fully develop mentally. But in many ways, she's a normal toddler, scooting around on her behind, giggling with her older brother Alex, crying when he kisses her too forcefully on the bulging left side of her face.

And Alex has found a measure of normalcy in the year his sister's been home from the hospital. He takes his sister's hand and slaps himself with it after he makes her cry.

"First, you go through 'Why me? Why her? Why us?"' Teresa said. "But after we got through that, we saw it wasn't punishment. We've learned so much from her and we realized God was giving us a special cross to bear."