• E-mail
• Print
• Comment
• Font Size
• Digg
• del.icio.us
• Discuss article

Specialists Help Conjoined Children Cope

Posted on: Monday, 12 December 2005, 18:00 CST

Kim Serraro's job is to help sick children cope with the stress of hospitals. And among her most fragile charges are Carl and Clarence Aguirre 2-year-old boys from the Philippines connected at the top of their heads.

As a child-life specialist at Montefiore Medical Centre in the Bronx, Serraro uses some special instruments: dolls with Velcro patches on their heads that the twin boys can pull apart and push together, helping to prepare them for their own eventual separation. Hand mirrors the boys play with so they can see each other's face.

But sometimes they just need to have bubbles blown at them.

On the night before their most recent surgery, Carl and Clarence were cranky, impatient for dinner. Serraro pulled out a green bottle of liquid soap and softly blew bubbles over the bed. The boys watched, entranced, then started reaching and giggling.

"What they really need is what we call distraction play, and bubbles are a good distraction," said Serraro. "It helps them cope with pain and discomfort by getting their minds off it."

Serraro is one of a half dozen child-life specialists at the Children's Hospital at Montefiore. They care for children suffering a range of medical problems and they tailor their care for each.

Video and music are used to soothe and distract. A toy syringe prepares the tiny patients for real injections. Anesthesia masks, treated to smell like bubble gum, are placed over their faces well before surgery.

The point is to make a scary environment less threatening, and doctors and experts say child-life specialists are integral to the treatment of children like Carl and Clarence.

In three major operations since October, surgeons have pushed apart the boys' separate brains and divided the tangle of blood vessels surrounding them. They still share one major vein, which is set to be divided in the next procedure.

The lead surgeon, Dr James Goodrich, said if the blood vessel work goes smoothly, doctors may complete the separation of the brothers' skulls the same day.

That surgery could come as early as this summer.

Doctors have taken a gradual approach to separating the boys, rather than doing a single, marathon operation, to reduce blood loss and help the twins adapt to their rerouted circulation systems.

Independent lives expected

The approach has brought an extended hospital stay and repeated visits to the operation room for the boys, who arrived from the Philippines in September.

In addition, they have received physical, developmental and nutritional therapy designed to prepare them for independent lives once they're separated, when it is hoped they will finally be able to sit up, stand and walk.

All of which has meant plenty of work for the child-life specialists at Montefiore and at Blythedale Children's Hospital in Valhalla, where Carl, Clarence and their mother stay between visits to Montefiore for surgery. Both hospitals and the medical team are donating their services.

"I'm very grateful to Kim and the hospitals," said the boys' mother, Arlene Aguirre.

The Aguirre brothers may be Montefiore's best-known patients, but Kim Serraro says other children get the same attention from the child-life specialists.

All patients up to age 21 are assigned to a specialist, and Serraro works with babies with birth defects, young cancer patients, teenagers on dialysis and their parents. Some patients and their families get tours of the hospital before they come in for surgery.

"Lots of kids just hate the idea of getting hooked up to an IV, and you can force it but then you'll have trouble every time. So we go about it in a calm way," said Serraro, who is 26 and from Mamaroneck.

"A kid might be refusing to take pills and that can be dangerous, so you try to find out what's bothering them and you solve the problem."

"It's the sort of things that the doctors and nurses don't really have time for but it makes a big difference to the kids. It's 100 per cent rewarding."

The unfortunate reality of their work is that child-life specialists often have to deal with the death of the children they attend and its effect on parents, siblings and the specialists themselves.

"You help them get what they need," she said. "We had a death, and the little brother had to come back and see where it all happened. So we took him and the parents through it."

Another specialist at Montefiore, 41-year-old Meghan Kelly of Croton-on-Hudson, said she recently was able to grant a boy's wish not to die in the hospital by finding a way to set him up at a relative's house not far away.

"You're going to be sad when a person dies, but if you made that an easier process, that's comforting," Kelly said.

Serraro said it's important not to become too close to her patients, which is difficult when the patients are children. She knows a delicate case like the conjoined twins is fraught with sad possibilities.

"We love them, of course. How could you not?" she said, gesturing toward the boys as Carl played with a plastic stethoscope and Clarence smiled at his mother. "But we know as well as anybody what's involved. We'll deal with it."

On the day the twins are separated, "We'll all be rooting," she said. "That will be such a big day. They're coming to an exciting time, a whole new world. They'll be seeing things they've never seen before."

Source: China Daily; North American ed.

More News in this Category