Illinois Donor Diary – Team Swanson

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!

Celebrate the Gift of Life on Child Health Day

Monday, October 3, marked the 83^rd annual celebration of Child Health Day. This brings to mind many stories of lifesaving organ transplants given to children in need. During April, we featured the story of Mia Royer, a one-year-old girl who received a lifesaving intestine transplant in 2009. Today, she is fully recovered and living the life of a healthy, happy three-year-old.

Mia and the Royer Family

Our friends at Children’s Memorial Hospital have featured the stories of several children waiting for and receiving lifesaving organ transplants. Mackenzie Tannhauser, a 17-year-old girl from Crystal Lake, posted a video diary of her wait for a heart transplant. Her series of videos shows the “ups and downs” associated with waiting for the gift of life. Thankfully, she received a transplant last month and is on the way to leading a healthy, productive life.

There’s also the story of Drew Boedigheimer, a two-year-old boy and Cubs fan who received two life-changing gifts—a new heart from a selfless donor and a visit from his favorite Cubs player, Darwin Barney. After his transplant, Drew’s doctor encouraged the Boedigheimer family to contact the Cubs to set up a visit from Barney, their rookie second baseman. The Cubs were more than happy to accommodate the request, and Barney paid a visit and help raise Drew’s spirits. Watch Drew’s story at WGN.com.

Todd & Drew Boedigheimer

Stories like this are made possible by people who make the decision to be registered organ and tissue donors. Learn more about how you can help save lives through organ and tissue donation at DonateLifeIllinois.org.  It takes just 30 seconds to register. It’s an ordinary action that can produce extraordinary results.

Donate Life Month Wrap-Up

April has ended, and May is officially here. We can now look forward to warm weather, kids coming home from school, days at the beach and all sorts of summer fun. But, before we get too far ahead of ourselves, let’s be sure to reflect on an extremely successful National Donate Life Month.

There were hundreds of events and news stories surrounding donation throughout April, which led to a HUGE boost in donor registrations. Here, in no particular order, are four of our favorites from the past month.

1. 30 Reasons You Should Register as an Organ Donor Blog

Scott's driver's license showing that he is a registered donor.

Scott Meis, a good friend of Donate Life Illinois, documented 30 reasons why you should register as an organ and tissue donor. Each day throughout the month of April, Scott gave a new reason to register. His reasons to register ranged from sharing donor family and recipient stories to his #1 reason you should register—Duh.

Scott’s blog is an amazing compilation of donation stories and information. We encourage you to take a few moments to read 30
Reasons You Should Register as an Organ Donor at Scott’s blog.

2. Charles Tillman and Paco Rodriguez

Organ and tissue donation leaped into the national headlines on Tuesday, April 19. Two nationally syndicated television shows prominently featured heartfelt organ and tissue donation stories.

Jackie Tillman, daughter and heart transplant recipient Tiana and Charles.

In the morning, The Oprah Winfrey Show featured the family of Chicago Bears cornerback Charles Tillman and their story of life and donation. Tiana Tillman, Charles’ daughter, needed  a lifesaving heart transplant as a baby, and she was fortunate enough to receive the gift of life from a selfless donor. Oprah highlighted the Tillman family’s story and then introduced them to their donor family. You can view the video here.

Recipients of Francisco Rodriguez's organs with Francisco's wife and child, Sonia and Ginette Rodriguez.

Later that afternoon, the ESPN program E:60 told the story of Chicago boxer Francisco “Paco” Rodriguez and his family’s decision to donate life after a fatal bout in Philadelphia. The story is available on ESPN.com here.

3. Gift of Hope Hospital Campaign

Morgan D'Organ joins Wendy, Nichole and Ryan at Children's Memorial Hospital in Chicago

Throughout April, the Hospital Development staff at Gift of Hope Organ & Tissue Donor Network worked closely with hospitals throughout Illinois and northwest Indiana to build donation awareness and register hospital staff and guests as organ and tissue donors. The Hospital Development staff held tons of events and registered hundreds of individuals as organ and tissue donors. Their efforts ranged from staffing donor registration tables to hosting educational panels featuring Illinois Secretary of State Jesse White.

Steve Ferkau and Anna Davlantes at Lifesaving Partners.

The Hospital Development staff also hosted the annual Lifesaving Partners Awards event with Fox Chicago News anchor Anna Davlantes as emcee and double-lung recipient Steve Ferkau as featured speaker. 

4. Commercial Featuring Mikahla Thornton and Brittney Payton

Illinois Secretary of State Jesse White’s office produced a commercial featuring heart recipient Mikahla Thornton and Brittney Payton, daughter of the late Chicago Bears legend. The commercial aired throughout Illinois and encouraged viewers to register their decision to be organ and tissue donors.

Thanks to all of you who made an effort to promote organ and tissue donation throughout National Donate Life Month. No effort was too small in April, whether it was a tweet to friends encouraging them to register or an event that drew thousands. If you haven’t done so already, take 30 seconds to register your decision to be an organ and tissue donor at DonateLifeIllinois.org!

Share Your Story: Part 1

In early March, Donate Life Illinois asked its Facebook fans and Twitter followers to share their stories about why they support organ and tissue donation.  Throughout National Donate Life Month, we will feature several of the stories that were submitted via our social media outlets.  Enjoy!

Mia’s Story (submitted by Trista Royer)

My daughter, Mia, was born with gastroschisis.  Gastroschisis is a birth defect that causes the intestines to grow on the outside of the body.  We were told that Mia’s birth defect would be a quick fix with surgery.  Unfortunately, we would later learn that Mia needed a transplant.

Mia had her first surgery to correct her birth defect at just 31 weeks.  During this surgery, doctors discovered that Mia only had 12 cm of viable intestine. Doctors then diagnosed her with a condition known as severe short bowel syndrome. This left Mia unable to ingest any food (not even an ounce of formula).

Mia was taken to Children’s Memorial Hospital in Chicago for bowel rehabilitation.  Doctors worked tirelessly to help Mia for more than a month with little to no improvement.  She was placed on total parenteral nutrition through a central line in her chest because of her inability to eat. After witnessing months of corrective surgeries, I was told that Mia’s final hope was a small intestine transplant. On February 14, 2008, when Mia was just six months old, she was placed on the national transplant waiting list for a small intestine.

Mia

 

Throughout the next year, Mia went through numerous central and PICC lines and many infections trying to keep her body well without food.  On February 4, 2009, almost a year after being listed, we received a call from Children’s Memorial Hospital’s organ procurement team.  They had great news—a potential donor.

We were thrilled at this news but also nervous.  We drove Mia to Children’s Memorial where Mia went through dozens of preliminary tests to ensure that the donor organ was a match for her.  She was taken to surgery around 10:30 that night, and her new intestine was transplanted around 1 a.m. on February 5.

Mia had a two-month recovery at Children’s Memorial and is doing amazingly well today.  She is two years post-transplant and living the life of a healthy three-year-old. Her doctors told us that she is the “poster child” for bowel transplants.

The Royer Family (Mia, Ben, and Trista)

 

As our story illustrates, organ donation is so very important.  Without this gift of life from our donor family, my daughter would be living on borrowed time or may not be living at all.  My husband and I are both registered organ/tissue donors. If anything ever happened to either of us, we wouldn’t think twice about donating to families that are in desperate need.  We understand that the pain of losing a loved one is severe, but we also have first-hand knowledge of the impact a single organ donor can have on people’s lives. We get to see smiling proof of the gift of life through donation every single day.

For more information about Mia and the Royer family, go to http://www.miaroyer.net.

To register your decision to be an organ and tissue donor in 30 seconds or less, visit DonateLifeIllinois.org.