Terminally-Ill Toddler is Facebook Hit

30,000 log on as parents try to find a donor.


LONDON, June 26, 2008 — -- Facebook is usually used as a social networking tool by young people looking for parties.

But in the case of 1-year-old Bethany Dawson, connecting with people around the world has become a way for her parents to fuel a desperate search for an organ donor for their daughter.

Nikki Summer, 21, and Tim Dawson, 28, of Cannock, Staffordshire (northwest of Birmingham), have set up a Facebook page for Bethany, urging people to join the United Kingdom's organ donation program. They hope it leads to finding a bowel and liver donor for Bethany, without which, doctors say, the toddler will not see her second birthday.

Bethany's parents remain hopeful, however, and have been overwhelmed by the public's response to their appeals; nearly 30,000 people have logged on to their daughter's Facebook page during the past week.

"It has been really incredible," Summer told ABC News, "the amount of support and cooperation we have received from perfect strangers, especially from people in America -- we are just amazed."

Bethany was born with gastroschisis, a condition affecting about one child in 5,000, in which the bowels and intestines developed outside the body. By the time Bethany reached her first birthday, she had already undergone 15 surgeries.

"The doctors told us of her condition at about 12 weeks gestation," she said. But we were told that her condition could be rectified with one or two surgeries."

Children affected with gastroschisis have a more difficult time eating normally. However, in a significant number of cases, the bowels can be reinserted into the correct body cavity; nasal gastric tube feeding is introduced, lasting over a given period of time, and the child gradually assumes a normal diet and goes on into adulthood to lead a perfectly normal and healthy life.

However, in Bethany's case, there were complications, including a lack of blood supply to the intestines, and while doctors struggled to repair the damage, she eventually developed liver disease. She was put on a liver and intestine transplant list in March of this year.To make matters worse, Bethany is unable to receive only a liver or partial liver transplant -- a common practice for children -- since her condition requires a transplant of the intestines plus the liver.

According to Dr. Girish Gupte, the consultant in charge of Bethany's case from the transplant side at Birmingham's Children's Hospital, a liver and small intestines donor would need to weigh less than 30 kilos (66 pounds), about the weight of a 10-year-old child or younger.

Although a relatively rare condition affecting approximately two to six children out of a million, most children born with gastroschisis, said Gupte, enjoy a good quality of life. However, 40 percent of the cases that develop liver disease as a secondary result can be reversed.

"These children are born with healthy livers," Gupte told ABC News in a phone interview. "The problem is with their bowel. A normal person can absorb and digest, but a child born with gastroschisis has to be given a central line -- a catheter placed into a large vein in the neck or chest to administer medication or food in this case."

If progress is made with various feeding strategies, then recovery is entirely feasible. But if the patient develops an infection as a result of the central lines and they eventually develop liver disease, then complications arise.

According to Britain's National Health Service, there is a 60 percent mortality rate on liver and intestine transplants in the United Kingdom for children who weigh less than 10 kilos, or 22 pounds.

In successful transplants, 60 percent to 70 percent of those children go on to live for about five years. Seventy percent to 80 percent survive for one year. According to Gupte, some children can survive up to seven, even 10 years following these kinds of transplants.

To most people, this does not seem like a lot of time. Bethany's doctors, however, remain optimistic and maintain that for parents, a few years with their children is better than none.

"What we have to think about is that this transplant is offering an option that if the child develops progressively, the child can lead an extremely good quality of life for a given number of years," said Gupte.

"Whatever time the parents get with their children leaves them with at least some happy memories for the rest of their lives. When you are faced with the option of death, parents are willing to take that chance."

For Bethany's parents, a donor cannot come soon enough. Just getting on a donor list can be disheartening. In Great Britain, children must have a maximum life expectancy of three to six months to have their names added to a national donor list.

Registering their daughter on Facebook has given Summer and Dawson control over the process. The worldwide networking platform also helps parents help their children as they wait days, months, even years before they hear anything from the hospital.

But what do doctors think of all this?

"As a doctor, any family that is encouraging organ donation is good news for the transplant team simply because of the shortage of organ donors in the U.K.," Gupte told ABC News.

"There is a particular shortage of child organ donation in this country, so as a pediatrician, I think what Bethany's parents are doing is great. But as a transplant surgeon it makes things slightly more difficult because there is a high risk of children dying while on the transplant list."

Gupte emphasizes that it is always a difficult decision when a loved one is dying, especially if it is a child. Parents also need to be aware that organs from one child can be used for several children -- a heart, a liver, a pancreas.

"We sympathize with parents whose children are on the transplant list, Gupte said.

"I guess they are trying to do everything possible for their child; when you are in a desperate situation, it is only a natural reaction."

For Bethany's parents, the decision came easily.

"Encouraging other parents to put their children, as well as themselves, on a donor's list may not be the most natural thing," Summer said, "but it would be if it was their own child that was ill."

But for a little girl who has spent only nine weeks of her life at homel and the rest in the hospital, it has not been the ideal childhood.

"It's been horrible," Summer told ABC News. "Most of time we live in the hospital, trying to lead a normal life. It's a huge strain on us as a family -- as parents and on Bethany. But by now Tim and I are so used to being in the hospital."

The couple's other daughter, 2-year-old Katelyn, spends much of her time in the hospital's playroom, as her parents try not to focus too much on what's to come for their family.

"To be fair, we don't look very far into the future," said Summer. "Our next milestone is Christmas -- to get as far as that."

For information on becoming an organ donor in Britain, Click here.

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