Karen Paulsen Garcia with husband Dago Garcia, and their sons, Matteus, 1, and Patrick, 9, and daughter Madelyn, 7, attend the UCSF Transplant Picnic at McNear’s Beach in San Rafael, California.(Photo: Deanne Fitzmaurice)
Karen Paulsen Garcia wasn’t supposed to live past the age of 2.
Garcia was born in 1982 in Livingston, California, with biliary atresia, a rare, life-threatening liver condition that affects newborns. The condition is when the bile ducts inside or outside the liver that allow bile to cleanse the body’s organs do not have normal openings. The bile, unable to go through the duct, was poisoning Garcia’s liver.
For Garcia this meant having countless surgeries throughout her childhood, living with yellow-toned skin and being thought of as the chronically ill child.
She wanted to dance and was not able to. She remembers, at 8 years old, having to carry a bile bag to school. The bag was external to her body and trapped excess bile.
She did not socialize with other children in elementary school; rather, she made friends with the doctors, nurses and other hospital workers and patients she saw on a regular basis.
At the time, live organ transplants were not common.
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“There were so many unknowns,” Garcia said. “They just kept doing treatments that would keep me alive.”
When Garcia was 10 years old, six months after being put on a transplant list, she received a liver transplant.
Though she was unable to get much information about the donor and his or her family, Garcia said she knew it was a child because only a child’s liver would be able to fit in a child’s body.
She remembers her mother crying over the thank-you letter she wrote the donor child’s parents.
“In the midst of their own tragedy they thought outside of their grief,” Garcia said. “I am so grateful to the person who donated the liver so I could go on and live life to the fullest.”
“I never forget that I’m alive because one child died,” she said.
Starting college at Willamette University, she decided she wanted to distance herself from her condition. She didn’t want to tell anyone about it and be further defined by it.
That wasn’t always easy, though, since she didn’t have the socialization others had.
She said she felt she was immature, that she wanted to be part of the things going on around her, but her condition had affected her relationships, her childhood development — everything.
With the help of her family and friends who “showed a lot of grace,” Garcia said she was able to have an incredible college experience. She graduated in 2004 and was married to her husband Dago Garcia in 2005.
She now has three children: Patrick, 9, Madelyn, 7, and Matteus, 1. She works as a union organizer for SEIU Local 503, one of Oregon’s largest public employee unions, organizing care providers in Marion and Polk counties.
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Karen Paulson Garcia holds her 13-month-old son, Matteus, on Thursday, Aug. 6, 2015, at Hoodview Park in Salem. Garcia received a liver transplant as a child. She now works to inspire and help others with her story. (Photo: DANIELLE PETERSON / Statesman Journal)
Through her work, she helps support workers whose children have developmental disabilities or are medically fragile.
“I think so much about illness and being chronically ill, especially my support system” she said. “But support systems need to be supported as well.”
Garcia works to make sure workers have good contracts, earn a living wage, have access to needed resources and are supported in the work they do. She also makes sure they have good care providers for their children who are paid well and advocating for the children.
“When your child is ill, the last thing you should have to think about is whether or not the nurse is going to have enough money to keep working,” she said. “They need consistent care.”
Garcia recently spoke about her experience at the 20th anniversary pediatric transplant reunion at University of California San Francisco hospital.
One thing she continues to advocate for in her work is the importance of organ donors.
“A lot of people don’t realize how great the need is,” she said. In fact, the rate of organ donors is decreasing even though there are thousands of people on waiting lists for transplants, some dying while waiting. Garcia said some estimates suggest 23 people in America die every day waiting for an organ.
But Garcia said people can make a huge difference if they donate. For every one person who donates, more than eight lives can continue and many others’ quality of life can be improved.
“I lived because they made that choice,” she said. “That gift is never taken for granted.”
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It wasn’t just the donor who made her life possible. According to Garcia, she would not be here today without the extremely strenuous work and unfailing support from her parents.
“Both my dad and mom were huge advocates for me,” she said.
Garcia said her mom was constantly by her side, working with liver organizations, and more, making sure she was ensured the best treatment possible.
Since the hospital in San Francisco was two hours away from her home, much of the time she was separated from her family. Her father stayed with her older siblings for much of the time.
“I can’t imagine being away from my husband and my kids so much,” she said, choking up.
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Karen Paulson Garcia watches her children—Patrick, 9, Madelyn, 7, and Matteus, 13 months—play on Thursday, Aug. 6, 2015, at Hoodview Park in Salem. Garcia received a liver transplant as a child. She now works to inspire and help others with her story. (Photo: DANIELLE PETERSON / Statesman Journal)
Garcia’s mother died of melanoma in 2004.
“I hope that by telling my story I will encourage other parents to not lose hope or doubt their instincts. It’s the best way to honor my mom’s work,” she said.
“I want other parents to know that it is worth it. Their work does not go unnoticed.”
She said she lives every day to honor the donor’s choice from her childhood and the hard work of her parents, while also trying to inspire and advocate for others.
“I try to teach my children that life is fleeting,” she said. “We are not promised tomorrow.”
npate@StatesmanJournal.com, (503) 399-6745, or follow on Twitter @Nataliempate
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