Ill Baby Fights For His Life

5-month-old's Liver Is Tragedy For Family

January 07, 1991|By Angela Gambill | Angela Gambill,Staff writer

Carl Surland's skin is the color of his yellow teddy bear, without the pretty gold sheen.

The 5-month-old lies next to the the stuffed animal in his crib in an intensive care unit at the Johns Hopkins Hospital. He's been fighting since he drew breath, struggling to process his food with a liver that doesn't work.

Now the tiny infant, not much bigger than his toy bear, sleeps on his back, linked to life by a maze of intravenous tubes, waiting for a new liver.

The odds are against him. Born with a fatal liver disease, biliary atresia, Carl's body can't break down food. The outer bile duct, which connects the liver to the gall bladder and intestine, is blocked. This prevents the digestive fluids from draining properly, poisoning Carl's blood.

The infant vomits and dehydrates, he has seizures and his temperature rises to 104 degrees for weeks at a time. The fevers worry his parents most.

When Carl's temperature rises above normal, he's taken off an organ donor list, because the liver transplant can't be performed while the recipient has an infection. When his temperature goes down, he goes back on the list.

Doctors recently told the Surlands their baby will live six more months without a new liver. That makes each new infection, each rise in temperature, a recurring horror.

"It's like a nightmare. I wish I could wake up and it would be all over," Diana, his mother, says.

The child's weight is another worry. A feeding tube has helped Carl grow to 14.5 pounds from 9 pounds in November, but the goal is to reach 20 pounds before the transplant operation, Diana says. If a liver that matches the infant's blood and tissue type comes along before then, they may have to go ahead with the operation anyway, she says.

Even if a liver is found in time, the odds are unpredictable with a procedure as experimental as a liver transplant, doctors have told the Surlands.

Carl would need to take medication to help his body continue accepting the liver, but that medication would harm his kidneys. So he'd need medication to protect his kidneys, and that medication would raise his blood pressure dangerously high, so he'd need medicine for that too.

A child who survives the first year after a transplant has an 80 percent chance of living a normal life, but each of the first several years is considered a struggle.

The Glen Burnie family's nightmare began in August, when their baby was born with jaundice but deemed well enough to go home a week later. A dozen times during his first month of life, the baby became dehydrated.

"I could feel something terrible was wrong, but we didn't know what," Carl Sr., 36,says.

Finally, he and Diana turned to another pediatrician, who immediately diagnosed a defective liver. A day later, the baby entered University Hospital. He's now at the Children's Center at Johns Hopkins, waiting for a liver. Unable to eat on his own, the baby is fed through a tube inserted into his chest.

"It's really stressful," his father says. "A bad Christmas and everything. He was home for three days in November, got dehydrated and has been in the hospital since then."

For the Surlands, life has become a mad round of work and hospital. "It's hard for the other kids, too, staying with sitters all the time," Carl Sr. says. The couple also has two daughters, ages 2 and 12.

Jennifer, the 2-year-old, cries for her baby brother constantly. "She wants to get in his crib at the hospital and kiss him. She cries for Ca-Ca to come home," Diana says.

The mother, who just turned 30, sits in the parents' waiting room at Hopkins, looking scared. She is wearing blue jeans and a pink T-shirt, and her eyes are red from crying.

"The hardest thing is, we don't know day to day what's going on, what will happen," she says. "It's so hard, watching your baby suffer."

She jumps at every phone call, wondering each time if it's the hospital, with bad news.

"It's never-ending," she says. "The hospital will call in the middle of the night and say he's ripped out his line."

The Surlands have joined a support group at Hopkins, which has helped, Diana says, and there is cause to hope: Every day new breakthroughs are made in transplant surgery.

A highly effective anti-rejection drug, FK-506, was released recently, and a new solution, the Wisconsin Solution, can store transplant organs for up to 24 hours, instead of six or eight. When the need is critical, doctors sometimes split single livers between adults and children, Diana says.

Lurking behind the Surlands' ever-present fear about their child's life is the problem of how to pay for it all. Carl Sr. was laid off from his job Nov. 5, and his insurance from will end in February. He's recently begun a one-man heating and air-conditioning business, but the family's health care will come through Diana's insurance from her job with Martin-Marietta Corp. The Surlands don't know how much the insurance will cover.

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