Last Year’s Liver Transplant Patient Now Parents’ ‘Live Wire’

When a medical show appears on TV, 3-year-old Carolyn DeMille drops her toys and watches the set with fascination.

The images recall a time when, for several anxious months, Carolyn’s life hung in the balance. A time when a catheter fed nutrients through a hole into her stomach.

Carolyn had biliary atresia, a congenital absence of bile ducts that connect the intestines to the liver. Children with this condition usually die.

But a year ago Carolyn had a liver transplant and became the first and only patient to survive the controversial liver transplant program run by Sharp and Children’s hospitals. Now she is in good health and growing normally at her home in Henderson, Nev., her parents said Monday.

Still, during a medical show, “she’ll stand in front of the TV . . . and say, ‘I don’t have a catheter anymore . . . Dr. Orloff made me better,’ ” said Carolyn’s mother, Jeanette DeMille, referring to surgeon Marshall Orloff who performed six transplants, including Carolyn’s, from October, 1983, to January, 1984. (The other five organ recipients died.)

Some Problems Remain

Of course, Carolyn still faces problems. Her cheeks are unusually chubby, and she has wisps of light-colored hair on her face--side-effects of the medication she must take for the rest of her life to prevent her body from rejecting the transplanted liver.

But those problems pale beside the simple fact that Carolyn is alive.

And she’s doing what any 3-year-old might do: watching “Sesame Street,” gobbling Cheerios and peanut-butter-and-jelly sandwiches, listening wide-eyed to a sibling’s recitation of the Three Little Pigs and throwing an occasional tantrum when she doesn’t get her way.

“Every time we play with her or see her do something new, it’s so wonderful--it’s like having (my) first baby all over again,” said Mrs. DeMille, 33.

In the weeks after the surgery Jan. 22, Carolyn suffered several seizures and had “a couple of bouts with some drugs that didn’t agree with her,” her father, Gaylen DeMille, 35, recalled.

Doctors warned that the cyclosporine pills (taken to prevent her body from rejecting the liver) would weaken Carolyn’s immune system, rendering her more susceptible to infections.

Yet, since leaving Sharp, Carolyn has only had one minor ear infection and had to be taken to an emergency room once when she fell off a chair, but doctors determined she was uninjured.

Sharp hospital spokesman Vince Bond said officials there are pleased with Carolyn’s progress.

“We are delighted that the (DeMille) case worked out so well, and we’re hopeful Carolyn will have a relatively normal life,” Bond said. “I myself had a chance to get to know the family, and they’re a very courageous, warm family.

”. . . She certainly was the type of youngster who grabbed at our collective hearts in the hospital. She used to ride her little bicycle up and down the hallways--I think it was a big hot dog on four wheels with pedals.”

Mrs. DeMille agreed. “She’s really been a live wire, just bouncing around . . . a real joy this Christmas,” she said. For Christmas “she got a Cabbage Patch doll from her doctor here in Las Vegas (plus) a rocking chair, some kitchen dishes, some musical tapes and story tapes . . . We have taken her out to enjoy Christmas programs, to see friends, to the grocery store.”

There’s one gift Carolyn really wants. Her orange-and-white kitten, Charles, was run over by a car while Carolyn was at Sharp and, Mrs. DeMille said, “she’s been asking us for a new kitten. But we haven’t gotten her one yet; her dad is allergic to cats.”

‘Eats All the Time’

At the moment, Carolyn “eats all the time. Prednisone (another medicine she must take to prevent rejection of the liver) has a tendency to make you think you’re always hungry,” Mrs. DeMille said. “ . . . She kind of goes on binges: one week it’ll be peanut butter and jelly, and another week it’ll be Cheerios.”

Still, Carolyn remains a shy little girl with chubby cheeks and a brown mop of hair who tends to cling to her parents.

“I think she is a little behind socially . . . She still tends to be a little babyish,” Mrs. DeMille said. “She’s still quite dependent on her mamma and daddy. She doesn’t want to be separated from either one of us or her brothers and sisters . . . She doesn’t really know how to talk to other children her own age.”

Each morning and every evening before bed, Carolyn takes two sets of pills--cyclosporine and prednisone--which weaken her immune system to prevent her body from rejecting the transplanted liver. She calls them her “pop pills” because in the hospital she was allowed to swallow them along with soda pop.

Monitoring Continues

And each week the little girl is taken to a medical lab in Las Vegas where a technician takes a blood sample. The specimen is frozen, packaged and shipped to Orloff’s office in San Diego, where he examines it to determine whether her cyclosporine level should be raised or lowered.

Orloff couldn’t be reached for comment Monday, but the surgeon has not done any liver transplants since January, 1984. Children’s and Sharp officials put his transplant program on hold pending an internal review of its efficacy. One reason for the review was that in May the state Medi-Cal program refused to finance further liver transplants at the two hospitals, largely because of the death rate, which was considerably higher than that at longer-established liver transplant programs in the United States.

Carolyn’s age and apparently successful recovery made her a media darling in San Diego--and the reporters haven’t ignored her in Nevada, either. A Las Vegas newspaper published a front-page story about Carolyn on Christmas Day, and TV interviewers occasionally drop by. Her parents have recorded the TV shows on videocassettes, and Carolyn “loves to watch herself on TV on the videotapes . . . She’s always been quite a ham,” Mrs. DeMille noted.

Fame has other benefits too. “Ladies in the grocery store will buy her doughnuts or a pack of gum,” Mrs. DeMille added. “She just turns on that smile and wins them over.”

1-Year Checkup Due

Mrs. DeMille plans to bring Carolyn back to Sharp for a checkup the week of Jan. 21, one year since the transplant. There she’ll undergo tests including a liver biopsy and CT (computerized tomography) scans to determine how her body is faring.

“You don’t really expect these kinds of things to happen to you,” Carolyn’s father said. “When it does, you go numb for a while. It’s been a trial for everyone; the stress is the hardest part of it.”

DeMille has had to cut back the number of hours he works as a plumber--from 40 a week to 35 a week--to comply with federal regulations regarding the income of Medicaid recipients.

Also, he thinks the experience of the transplant may have made it more difficult for Carolyn to grow up.

“We’ve had a bit of trouble trying to get her potty trained,” he said. “And there have been times when she wet the bed and woke up screaming. I don’t know if that was because of bad memories of the hospital; it’s kind of hard to read the mind of a child.”

Parents Credit Faith

Carolyn’s parents, Las Vegas natives and stalwart Mormons, credit Carolyn’s good health to “a lot of luck and a lot of wonderful people and our blessings from God,” Mrs. DeMille said. “We’ve always been a very religious family, and our faith has kept us going.”

The DeMilles, have been married for 13 years. They have three older children: Darren, 12, Lisa, 10, and Kendall, 5.

So far Carolyn’s medical bills have totaled nearly $300,000, almost all of that covered by private insurance or Medicaid. Some help has come from Las Vegas residents who contributed $1,300. The family has become an object of curiosity since the transplant. “People have (asked) me, ‘How did you stand it, how did you survive all the stress?’ ” Mrs. DeMille said.

Her answer: “One day at a time. You learn to deal with the problems you have now and set aside anything else.”