With 4,700 people in Illinois awaiting organ transplants, state makes push for donors
by: Monifa Thomas
Identical twins Luke and Jake Swanson of Arlington Heights have the same big blue eyes and fine blond hair, though Jake wears his curly.
Unfortunately, the 17-month-olds also share a potentially fatal liver disorder.
They're thought to be the first twins in North America to be diagnosed with biliary atresia, which blocks the ducts that carry bile from the liver to the gallbladder.
The disorder, which occurs in one out of every 10,000 to 20,000 births, is not thought to be genetic.
On Thursday, the first day of National Donate Life month, Illinois Secretary of State Jesse White urged people to sign up for the state's organ and tissue donor registry to give the Swanson boys and others "a second chance at life."
Illinois has about 6 million registered organ donors, "more than we've ever had before," said Jerry Anderson, CEO of Gift of Hope, a nonprofit organization that coordinates organ and tissue donation for Illinois and Indiana.
"But we continue to face the sad reality of an ever-growing waiting list that now includes more than 106,000 men, women and children in the United States," Anderson said.
In Illinois, more than 4,700 people are waiting for organ transplants. Luke and Jake Swanson were added to the list last fall.
Though both boys look healthy, Luke has veins in his esophagus that shouldn't be there -- a complication caused by his body's attempt to route blood around blockages in his liver.
Last October, he was rushed to the hospital when one of these veins ruptured.
"He was literally fine one second. Then he rolled over and he was ashen white and blue-lipped and not responding. It was awful," said Luke and Jake's mom, Robyn Swanson.
Dr. Estella Alonso, medical director of the liver transplant program at Children's Memorial Hospital, said Luke's gastrointestinal bleeding is "a big problem," but it's not one of the factors that's used to determine his place on the United Network for Organ Sharing's transplant waiting list.
Jake, meanwhile, has a higher spot on the list than his brother, because the damage to his liver is more advanced.
Like many parents in their position, Robyn and Scott Swanson said the hardest part is not knowing how long their sons will have to wait.
"Because there is a lack of organs, we sort of go in every day knowing that the kids are probably going to get sicker before they're able to get those transplants," Robyn Swanson said.
Swanson, who wasn't a registered organ donor before her children became ill, encouraged others to at least consider the idea of signing up for the registry.
"You never know when this is going to happen in your family," she said.
To learn more about the registry, go to www.lifegoeson .com.