UNOS DonateLife

February 3, 1998

Update: Good As New, 5-year-old Brittany Combs, one of only a few in the world to receive a five-organ multivisceral transplant

This story originally appeared in the Spring 1997 issue of UNOS Update.

"You want to play in my room now?" the little voice asked. It was 10 p.m. and 5-year-old Brittany Combs was still up, hanging out with the grown-ups. "I don't know if I'll have time," the visitor answered. "We'll have to see."

Brittany went back to drawing. A house and some flowers emerged. Some letters and a childish scrawl filled up the next several pages.

"Brittany can say anesthesiologist with no problem," her mother, Julie, noted. "But she can't say M & Ms."

A Rare Condition
Brittany Combs was born June 11, 1991, with necrotizing enterocolitis, a condition that results in intestinal paralysis or perforation. Five years later, on July 18-19, 1996, she received a liver, stomach, pancreas, small bowel and a piece of colon-one of only a few in the world to receive a five-organ multivisceral transplant. Relaxing with Brittany and her parents, Mel and Julie Combs, in their home in Jacksonville, Fla., a visitor sees a vibrant little girl who seems perfectly healthy. Not shy at all, she loves having company. She chatters to herself while she sketches on a notepad. Her vocabulary includes medical terminology that most people have never even heard of.

"She was lying on the floor one night and wouldn't get up," her mother related in an interview after the visit. "She claimed it was her prostate."

Maintaining Normalcy
Brittany snuggled up against her mother, sitting on her lap and placing her head against her chest. This was the calmest Brittany had been all evening. Earlier, she had jumped up and down with a pom pom cheering on her favorite team, the Jaguars. She had eaten "Jimmy's" chicken, her favorite kind-it's really crispy-and played the piano. She brought out stuffed animals, her backpack and her new Cabbage Patch doll-the one that eats plastic French fries and sometimes little girls' hair.

"We like to buy her toys with a food theme," her mom said.

Not so long ago that Cabbage Patch doll had more luck consuming solid food than did Brittany. Born five weeks premature with a tiny, twisted intestine too fragile to function, Brittany relied on total parenteral nutrition (TPN -- receiving nutrition intravenously) from her fourth day through her fifth year. Vomiting and diarrhea were constant elements of her life along with hospital stays and uncomfortable examinations.

"She's had 10 major operations, including the transplant," Mel said. "They always told us it was a mechanical blockage-the bowel was so twisted and constricted nothing would pass through. They would explain to us each time that they thought they had gotten all the strictures, but they also thought the bowel might be damaged beyond the point where it could be repaired 100 percent."

Life Was Rough
Although the Combs won't readily admit it, life was rough. Julie Combs quit her job as a data processor at State Farm Insurance so she could stay home and care for Brittany. She and her husband learned how to administer TPN, clean, maintain and protect a catheter and watch for infection. They were constantly cleaning up.

The Combs gave Brittany little bits of solid food so she wouldn't have difficulty later chewing, swallowing and coordinating how to eat.

"We didn't want her thinking that just because she would eat, she had to throw up," Mel said.

Despite all this, the Combs tried to maintain a stable home life. If Brittany had a friend over to play, her parents explained to the friend's mother that her child couldn't tug on Brittany's shirt or hit her on the chest, where the catheter was. The catheter was treated like a normal part of Brittany's anatomy, like an arm, a leg or a belly button. Brittany grew up thinking everyone had one. Because they had to maintain the IVs in Brittany from about 8:30 p.m. to 8:30 a.m., they didn't go out at night. If they went to the movies, they went early. If they went to a restaurant, they went with family members who knew Brittany's needs. They always took two or three changes of clothing for Brittany, a diaper bag and all kinds of wipes.

Brittany faced the constant risk of dehydration and frequently had to be rehydrated at the hospital.

"She didn't know what feeling good was," Mel remarked. "To her, this was normal."

The Transplant
When Brittany was called in for her transplant at University of Miami/Jackson Children's Hospital, the Combs thought their daughter would probably receive a liver and an intestine. After eight or nine hours of surgery, they learned there'd be more. First there was a stomach. They found out the next day about the pancreas.

"We were stupefied at that point," Mel stated.

Within two weeks of the transplant Brittany was sitting up, and a couple days later she was standing. She was in the hospital two months following her transplant and in a hotel in Miami with her parents for another month afterwards.

Because her stay coincided with the 1996 Olympics, the nurses awarded her "gold medals" every time she walked past their station. Within a month, she was eating. Now she adores grilled cheese sandwiches, chocolate chip cookies and Jimmy's chicken.

At six months post-transplant, Brittany had no rejection nor any need for readmittance. She had a temporary ileostomy (an artificial opening in the small intestine)so that her doctors could easily insert a scope, and a J-tube for short-term supplemental nutrition. Her parents had to change the ostomy bag each night, but that was minor compared to what they had already been through.

"I know a lot more about medical stuff than I've ever wanted to know," Mel admitted.

Not Giving Up
"It's odd, because I don't like doctors, I don't like hospitals, and I was not the most enthusiastic person about the possibility of a transplant. I understand why they're done. I understand they work. But I don't necessarily agree with them. "I don't believe in life support-it's almost like, should you really be doing a transplant to keep somebody alive when maybe their time is really up? But what do you do when your 5-year-old is sitting there? I really struggled with it. But I said I'm not through. I'm not going to give up on Brittany."

He continued, "When your 5-year-old asks, …"What happens if I die?', what do you tell her? She didn't get upset. I got upset. You're not used to your 5-year-old saying, "What if I die? What's going to happen if I die?'"

Julie remembers, too. "I told her she was not going to die. And that's what I truly felt. When she said, "What if I die?', I said, "We'd be very sad that we lost you because you won't be with us any more, but I feel in my heart that you aren't going to die.' She was fine with that."

Instead of death, the Combs found life. This past Christmas was the very first they had at home.

"Do you want to play in my room now?" Brittany asks.

It's too late to play now, but Brittany doesn't raise a fuss. She politely says good night, and she soon goes off to bed.

Editor's Note:
February 3, 1998: Julie Combs reports that Brittany is doing "terrific." She's now attending first grade and doing all the things other little children do. Brittany still receives supplemental feedings overnight to keep up her weight, but outside of taking immunosuppressant medications, she requires no extra care.