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Twins overcome rare liver disorder with life-saving transplants

At left is Jake sitting next his brother Luke Swanswho both received life-saving liver transplants recently are with their parents

At left is Jake sitting next to his brother Luke Swanson, who both received life-saving liver transplants recently, are with their parents Robyn & Scott in their Arlington Heights home on Wednesday, April 10, 2013. | Richard A. Chapman~Sun-Times

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Updated: May 15, 2013 6:30AM



Luke Swanson used to say barely more than a word or two.

“Yes” or “No.” Or a vague answer.

But within two days of the liver transplant that would save his life, the 4½-year-old had turned into a chatterbox.

“He was like ‘Hi, Daddy. How you doing? Let’s play with Batman. Can you give me some macaroni and cheese?’ ” Luke’s mom, Robyn Swanson, said. “The improvement is drastic.”

Luke and his identical twin brother, Jake, each had a potentially fatal liver disorder called biliary atresia, a life-threatening condition in which the bile ducts from the liver to the gallbladder are blocked.

The brothers from Arlington Heights were thought to be the first twins in North America diagnosed with the disorder, which occurs in one out of every 18,000 infants and is not thought to be genetic.

The Swanson boys were added to the organ transplant waiting list in fall 2009 and were featured three years ago as part of the national Donate Life Month campaign in April.

Jake got his liver transplant Aug. 11, 2011, at the old Children’s Memorial Hospital, but then had a scary complication afterward. Luke got his liver June 28, 2012, at Chicago’s new Lurie Children’s Hospital.

The two families who donated their deceased loved one’s organs to the Swanson boys could not be reached.

Robyn Swanson would only say that her family had exchanged multiple letters and pictures with both donor families, and “they seem like they are getting comfort from knowing” how well both boys are doing because of the “wonderful, selfless, difficult decision” they made at that time.

A child with biliary atresia used to be considered a suitable match for a transplant only if the liver came from a small child. Advances in treatment, however, allow the option of “reduced size” or “split liver” transplants, in which a piece of an adult liver can be used for transplantation in a child.

Thanks to the donations, new livers for Jake and Luke rid them of the disorder, and they are now “healthy and strong,” said Dr. Estella Alonso, medical director of the liver transplant program at Lurie.

Each year, more than 300 people in Illinois die waiting for an organ transplant. Odds of receiving an organ are better if you’re a child, but it’s still not a given that you’ll get the transplant in time, Alonso said.

Swanson described the feeling she and her husband, Scott, had when each of their twins finally received life-saving transplants after four years of waiting as similar to climbing Mount Everest.

“It took so long, and there were so many tribulations. To reach this point, it’s amazing,” she said.

“I say it’s like Mount Everest because I know we still have to descend. So I’m fully aware that there could be problems and complications along the way.”

Both boys have already had their share of complications.

Luke’s challenges came before the transplant. First, he was rushed to the hospital because 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 — ruptured. Then, in May 2011, Luke suffered a near-fatal gastrointestinal bleed.

A shunt was put through Luke’s liver to allow blood to flow more normally and prevent more bleeding, but it also caused toxic substances to build up in his blood because his liver wasn’t able to filter the toxins properly. Luke’s resulting condition, called hepatic encephalopathy, worsened his brain functioning, which his mom thinks contributed to his suddenly not being able to talk much.

Jake, meanwhile, did not have any major complications until after his transplant. Because Jake had to take drugs to prevent his immune system from rejecting his new organ, he wasn’t able to fight off Epstein-Barr virus, and it led to a disease similar to cancer in his small intestine.

The disease, called post-transplant lymphoproliferative disorders, can be fatal, but after a series of treatments starting in December 2011, a CT scan done March 29 suggests that it’s gone.

“That’s one of the worst complications you can have,” Swanson said. “But he is doing very well.”

Both Swanson boys still need to be on medication and go to Lurie at least every two months, not including the laboratory tests they get.

“They need this ongoing medical care, which is really important. But for many other aspects, to just look at them, they look like healthy kids,” Alonso said. “Really a lot of the parts of their life are very, very normal.”

So much so that Jake and Luke are looking forward to going to Disney World along with their 7-year-old brother, Gunnar, in the fall, now that the Swansons don’t have to worry about organ transplants.

Robyn Swanson, meanwhile, is looking forward to something else.

“I am so looking forward to ... being able to have a normal summer with my boys.”

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