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Illinois Donor Diary – Team Swanson

Posted Dec 08 2011 1:10pm

A few weeks ago, we asked Robyn Swanson to write a short blog post about her experiences with organ and tissue donation. Robyn has a unique perspective on organ donation. Her twin boys, Jake and Luke, were diagnosed with biliary atresia which caused both to need liver transplants.

The Swanson Family

Our twin boys, Luke and Jake, became the newest members of “Team Swanson” in October 2008. At birth, they were the picture of good health. But it soon became apparent that something wasn’t right when the slightly yellow, almost jaundiced appearance, associated with newborns lingered.

Just three months later, we received devastating news from the doctors at Children’s Memorial Hospital. Luke and Jake both had a rare disease called biliary atresia, a condition in which the liver’s bile ducts develop improperly. The doctors at Children’s Memorial were as shocked as my husband and me since they were unaware of a case of twins both being diagnosed with this condition.

The exact cause of biliary atresia is unknown, but experts believe that during the third trimester of pregnancy something causes the fetus’ liver to attack itself. The build-up of bile causes irreversible cirrhosis of the liver. The only cure for my boys would be liver transplants. Both were place on the national organ transplant waiting List in fall 2009. Our family’s wait for two healthy boys was under way.

Waiting for a new liver.

On August 11 of this year, after almost two years of waiting, we were blessed with a call from the transplant team at Children’s Memorial. They had amazing news—there was a match for Jake. He received his new liver on August 12 and has experienced an amazing recovery. He is a new kid, full of energy and life!

As a family, we now find ourselves in an unusual and uncomfortable place.  We are excited and relieved for Jake, but we still feel very anxious and concerned for Luke as he continues to wait for a transplant. We are hopeful for Luke and his future and anticipate the day he will be able to run, laugh and play like his brother Jake.

As a family, we often reflect back on our journey. One of the first thoughts we had when we saw Jake in recovery was that donor family was in the opposite situation that we were in. They were grieving while we were joyous for Jake and his future. My eyes fill with tears when thinking about them. They decided, in their darkest moment, to help Jake and others like him during their unspeakable tragedy. We are forever grateful to this anonymous family for their gift of life.

The Swanson boys on the way to the Bears game.

This September, our friends at Children’s Memorial and Donate Life Illinois asked Team Swanson to join them at the Bears versus Packers game at Soldier Field. Of course, we said “yes” and were excited to go.  The smiles on all of our boys’ faces that day were priceless as we walked on the field. It was an encouraging reminder of all of the wonderful memories that are yet to come—memories made possible by offering the amazing gift of life through organ and tissue donation.

The boys at Soldier Field.

- Robyn Swanson

Register your decision to save lives by becoming an organ and tissue donor at DonateLifeIllinois.org !


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