New livers bring Arlington Hts. twins to health

As Luke Swanson gently plays with toy cars and trucks, his brother Jake jumps on a couch, occasionally throwing their mother a mischievous grin. Jake's wild, blond curls bounce around, amplifying his energy, while Luke's serious eyes focus on lining the vehicles up just the way he wants them.

Sitting cross-legged on the ground, Luke says he would like to be a “pet doctor” when he grows up. Jake pauses from jumping for a minute to say he wants to be a landscaper.

For now, though, the 4-year-olds from Arlington Heights often take on the persona of superheroes with their older brother, Gunnar. Jake is a fan of Iron Man, while Luke prefers Captain America.

The two are certainly different, but they are forever bonded by much more than the fact they're fraternal twins. Thanks to transplants they received almost a year apart, the boys are both survivors of a rare, life-threatening liver disease.

After years of worry, their parents, Robyn and Scott, are visibly relieved and filled with joy to finally see their children healthy.

“Yeah it's loud, and they're crazy, and it's chaotic, but that's like, that's what it's supposed to be,” Scott said as he watched the boys play together. “I would say it feels like normal, but I'm not really sure what that is because normal is new for us.”

Robyn also describes the family's current state as “normal,” but she is more slowly coming to the realization that the worst is, hopefully, over.

“It's so amazing to just be doing normal things,” she said, adding that she's looking forward to a summer of swimming, baseball practice and traveling. “It feels like such a relief.”

A rare case

Like many other babies, Jake and Luke were jaundiced when they were born in October 2008. But by January their skin and eyes still hadn't cleared up, so the boys were scheduled for blood work.

Despite doubts by some doctors that both boys could have it, the two were diagnosed with biliary atresia, a condition that damages and destroys the bile ducts. The cause is unknown and the only known treatment is a liver transplant.

According to Dr. Estella Alonso, medical director of the liver transplant program at Ann & Robert H. Lurie Children's Hospital, biliary atresia occurs in about 1 in every 12,000 live births.

Having it happen twice in one family is very unusual, she said. And the Swansons are the only documented case in the U.S. and Canada of twins with the condition.

“It's such a potentially overwhelming situation,” Alonso said of having newborn twins with the disease.

In the months that followed, Jake slowly got worse, while Luke went through a series of horrific complications, including blood backing up into his spleen and into vessels in his esophagus. Twice, Luke ended up in the hospital for almost a month due to “catastrophic bleeds.”

Robyn said Arlington Heights paramedics once saved Luke's life in their driveway and for a while she was scared to have him at home, afraid help wouldn't come in time if he had another bleed.

“They sort of went on two different paths,” Robyn said of the boys' health. “Lucas was more sick in a way that could really hurt him, but as far as the listing for the organ transplant, Jacob was higher up on the list because he more fit the guidelines they use to determine where your place is.”

Alonso said Luke's complications weren't captured in the pediatric end-stage liver disease, or PELD, score, which was used to determine who received a transplant first. The score doesn't factor in problems like gastrointestinal bleeding and hypertension. Therefore, Luke had to wait longer for a transplant.

“You're stuck with the system and how it's set up to be, and for Lucas, it really isn't set up for children like him,” Robyn said. “We were just sort of stuck waiting, and there's nothing you can do but kind of hope and be really diligent that you're watching for the slightest little thing that could tell that something's not right.”

Help from friends

During the long wait, family friend Margaret Bruick jumped into action with a group of Scott's high school friends. They took turns bringing meals over to the Swansons' home when they needed help and regularly visited the family whenever the boys were in the hospital.

“We would talk about insurance and the cost of everything, and it was just astronomical,” she said.

So they organized a variety of activities to help with medical bills. A fundraiser in late 2010 at Metropolis in Arlington Heights pushed the family past $100,000.

“We were super happy as a group that they didn't have to stress over (the medical costs). They could just focus on the boys,” Bruick said.

Robyn added that family and friends in her hometown, Cleveland, also organized a fundraiser that was so well-attended it felt like a high school reunion.

“It was really helpful,” Robyn said, adding that the boys were diagnosed right as the financial crisis hit, which together resulted in the couple putting their small construction business on hold. Scott now works as a project manager, and Robyn works in interior design.

Though the family now had the money, friends were on edge as the family waited for two livers. The fundraising “almost seemed like the easy part,” Bruick said.

The family was told both boys would have a transplant by the time they turned 2. But Jake received his in August 2011, two months before he turned 3. And Luke had to wait almost another year, finally getting his in June 2012 a few months out from turning 4.

It was a nerve-wracking time, but Robyn said she is glad that there was a gap in between the two procedures because both boys needed a lot of care afterward.

“When we went in for the first transplant we were very nervous,” she said. “The second one felt like we had finally just ran across the finish line.”

“It's like the weight of the world being lifted off you,” she added.

After the surgery, the family faced another dilemma when Jake developed post transplant lymphoproliferative disorder, a disease similar to cancer that is driven by the Epstein-Barr virus.

As a result, he had to go to chemotherapy treatments every Friday for three months last year, Robyn said. He continues to have regular visits with an oncologist, but overall he is healthy.

Bruick said now that the boys are a little older and more developed, Jake has become “a spitfire” who willingly shows off his scar, while Lucas is “methodical” and doesn't like to talk about “the organ.”

“It's such a difference to see them now,” Bruick said. “Before their transplants, they were a little developmentally behind. Now they're walking, talking as quickly as other kids.”

Bruick said she is impressed with the way Robyn and Scott have handled everything, calling them “pillars of strength.”

Dr. Alonso added that the Swansons are inspirational for other families with children who need transplants.

“They're both doing beautifully now,” she said of Jake and Luke. “The way that the family is managing their ongoing medical care and their different problems ... it's so encouraging and gives hope to other families.”

Life goes on

Despite their joy that two livers were made available, the whole experience has been bittersweet for Robyn and Scott. While they couldn't reveal any details about the donors, both parents teared up as they talked about the gift of life two strangers gave their children.

“It's been difficult for me, I have to say,” Robyn said, adding that so far she has only exchanged letters with the donors' families. “You're so excited and so happy to have this blessing for you, but the reality of it is the other family is having the worst time of their life. How do you properly say thank you? I don't even know what to say.”

Robyn said it was important for her to know the donors' birthdays, so she could remember them then and not just on the day they died. She has also received photos of the donors to put a face with their name.

“It's obviously a wonderful thing that this (donor) program even exists. It's a miracle. and I'm extremely grateful for it,” Scott said. “But it's a serious loss, and heartache, for another family. So in some ways I feel almost guilty or selfish.”

Robyn said one of the families has expressed interest in meeting the boys, but for now she is taking things slow. Telling Jake and Luke about the donors will be “a whole other hurdle” they'll have to face later in life, she said, because they don't fully understand what happened yet.

According to Donate Life Illinois, more than 300 people in need of a transplant died while waiting in 2012.

“The very good thing is not a lot of children die (waiting),” said Dave Bosch, director of communications at Gift of Hope Organ & Tissue Donor Network. “The problem is with more and more children seeming to be in need of a transplant, the likelihood of a child dying increases.”

While Illinois' change in 2006 to a “first-person consent” registry, in which the family can't overrule the donor's decision, has been helpful, Alonso said there are still improvements that can be made regarding the organ transplant program.

“Any policies or initiatives that would help to get children transplanted faster would be so important,” she said. “Every month that they wait for their transplant ... is just time they're missing in their cognitive development and their physical growth. It takes so much longer for them to catch up than it takes for them to get behind.”

The Swansons said there are many misconceptions regarding the organ donation process, and they urge anyone interested in becoming a donor to research the program and tell their families of their decision.

“Giving the gift of life is the biggest gift, the most altruistic gift, the most unselfish gift that you could ever give, ever,” Robyn said. “I think it's important if you feel that way that you tell as many people that are close to you as possible so they feel comfortable.”

Organ donation

Ÿ In 2012, more than 300 people registered for transplants in Illinois died while waiting.

Ÿ Major organs that can be donated include the liver, heart, lungs, kidneys, pancreas and small intestine.

Ÿ Tissues that can be donated include corneas, bone, saphenous and femoral veins, heart valves and skin.

Ÿ Corneas and kidneys are the organs needed most in terms of the number of people waiting.

Ÿ Hearts, lungs and livers are needed the most in terms of lifesaving ability.

Ÿ To register to be an organ donor, visit <a href="http://donatelifeillinois.org/">donatelifeillinois.org</a>.

<i>Source: Donate Life Illinois</i>