Twin toddlers from Arlington Heights need liver transplants
On the liver transplant scale, toddler Jake Swanson rates a 17. His twin brother, Luke, scores a 9.
Whether that's good or bad depends on how you look at it. A zero is healthy, and 40 is near death.
Their mother is desperate for her sons to get liver transplants, which requires a high score. But she lives in fear of them getting in such bad shape that they qualify for a transplant.
The rating system that decides who gets organs depends on measures of liver function and growth. It's a Catch-22 that could drive any parent to the edge.
"They have to move up on the list to get a liver - but that means they're getting sicker," the twins' mother, Robyn Swanson, said. "Inevitably, they have to get sicker before they get better. They will need a liver transplant, there's no way around it."
The Swanson twins, who live in Arlington Heights, are a 25-million-to-one shot - the only twins in North America who both need liver transplants due to biliary atresia, a rare condition in which bile ducts from the liver are blocked or missing.
This leads to liver damage and impairs the ability to digest fat, which causes severe problems with the digestive system. The only cure is a transplant.
The cause is unknown, though an immune system overreaction is suspected, and a viral infection in susceptible infants could play a role. Because of their unique dual condition, the twins are being studied to look for a genetic factor.
The disease leaves the boys at the mercy of a new organ donation system that is still struggling to keep up with demand. And the Swansons are also straining to keep up with a health insurance system that raised their costs just as they need the most help.
Registry catch-upIllinois instituted a new "first-person" organ donation registry in 2006. Previously, donors signed the back of their driver's licenses and needed two witnesses to sign.Upon death, family consent was required, and some families, faced with a sudden emotional decision, reversed their loved one's wishes and refused to make organs available for transplant.Under the new system, the donor registers with the Secretary of State's office upon getting a drivers license. That person's name is kept in a registry, and no further consent is required.Four years later, the new system is still struggling to catch up to the numbers of the old system, with 5.1 million people signed up, compared to 6 million under the old system.But the system is an improvement, says Dave Bosch, spokesman for Gift of Hope, a not-for-profit group that promotes and coordinates donations. The donation rate from people who've signed up has gone from 80 percent to 85 percent.By eliminating families reneging on donations, the new registry saves an additional 100 lives a year. Each donor can save numerous lives by donating heart, lungs, kidneys, liver and corneas, plus samples of skin and bones.It's important for the twins because - along with many other critical factors that decide who gets an available organ - priority is given to local patients. The twins are most likely to get help from donors in the area.To increase donation rates, State Sen. Dale Risinger, a Republican from Peoria, has proposed a law to create a "presumed consent" program in Illinois. Rather than requiring people to opt into the program, as is done now, it would presume each person would donate organs upon death, and require them to opt out, as is done successfully in some European countries.The Secretary of State's office and Gift of Hope oppose the idea, saying it would undermine trust in organ donation. A series of hearings around the state is planned this year to gauge public reaction to the proposal.Nationally, more than 100,000 patients are awaiting a variety of organs for transplant.About 16,000 of them need a liver, and 6,000 of them get it each year, but another 2,000 die waiting for a donation that never comes.Another mortgageTo look at them, other than Jake's yellow skin and eyes, you'd never know the twins were sick. They're not identical and barely look related. They crawl madly around their house giggling and trying to keep up with their 4-year-old brother, Gunnar.Luke is the daredevil, trying to climb up everything he can reach. Jake just took his first steps, and takes things away from Luke, while Luke wants to hand everything to someone else.Their grandfather, Mount Prospect architect Paul Swanson, says it's tough not knowing what may happen."How do you sleep?" he said. "It's a real tough deal."Jake was born jaundiced, which is not unusual for newborns, but when his yellow pallor persisted, his mom knew something was not right. Tests confirmed that Jake and Luke had biliary atresia.Both underwent a "Kasai" surgery to make new connections between the liver and intestines, the most effective treatment available.It helped Luke, but not Jake. Then Luke started having complications.With their condition, the body often grows new veins that rupture easily and lead to internal bleeding."We almost lost him in October," his mother Robyn recalled. "He was playing one minute. The next minute he was blue and lifeless."Luke lost half his blood, but Arlington Heights paramedics got IV fluids in him immediately and doctors at Northwest Community Hospital stabilized him.As a result, both boys must undergo periodic sclerotherapy, in which a tube is inserted down their throats for an irritant to scar those extra blood vessels in the esophagus and stomach. It's painful, but they seem to get over it fairly quickly.Fortunately, insurance through the Swanson's small construction company has covered most of the boys' medical costs, which can reach more than $300,000 per transplant. But now, the family is struggling to pay insurance rates that have doubled to levels comparable to their mortgage.They also must pay all costs not covered by insurance, like a special diet and vitamins for the boys, which cost $150 at a time, and medical transport for treatment at Children's Memorial Hospital in Chicago, one of the foremost pediatric transplant centers in the world."They're one of the most special families we've worked with," nurse practitioner Joan Lokar said. "I've never seen a family with two twins with a life-threatening disease at the same time. They really step up to the plate and manage."To help pay the bills, friends and family have formed a chapter of the Children's Organ Transplant Association, which will hold fundraising events in the area and online, at cotaforlukeandjakes.com.Emotionally, Robyn finds herself getting upset from time to time and not knowing why."The worst part is it feels very unending and long," she said, "since no one can say when the liver transplants will happen or if something will happen along the way."It feels like you're walking through a dark room trying to find a door on the other side and having no idea where it is.""It's a part of our life now," Swanson said. "We're doing OK, if we can get past this big hurdle and move on."False20001515Seventeen-month-old twins Jake, background left, and Luke held by their parents Scott and Robyn Swanson at their home in Arlington Heights. Jake and Luke are the only twins in North America who both need liver transplants.George LeClaire | Staff PhotographerFalse