Mother of Transplant Survivor Visits D.C., Advocates for Biliary Atresia

In 2013, Heidi Anderson’s daughter, Deanna, was only three months old when diagnosed with a rare, life-threatening liver disease called biliary atresia, a disease of the liver and bile ducts that appears in infants. The baby appeared jaundiced, showing a yellow tone in her skin color and eyes.

Her only chance at survival was a liver transplant.

After waiting eight months, a donor liver became available months in February 2014, when Deanna underwent a successful eight-hour transplant surgery at Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center.

In the three years since the surgery, Deanna has thrived. She’s healthy, happy, and strong.

For her part, Anderson has become an advocate for children suffering from biliary artresia, devoting much of her time to spreading awareness about the rare disease. Recently, she was invited by the American Liver Foundation to visit Washington, D.C., for advocacy week. It was an opportunity to speak with elected officials about the demands for early testing for biliary atresia, including indirect and direct bilirubin testing and the need for more registered organ donors.

“I’ve always promised Deanna since the day she was diagnosed that I would spread awareness and share how Jackson saved her life,” said Anderson. “Along with other liver disease advocates and mothers like me, we made history!”

Anderson shared details of her experience in our nation’s capital:

“On a cold, icy day, I walked to Capitol Hill. My experience was worth the heavy coat and frozen hands. It was pretty intense to think that I would be traveling to the place where laws are made. We met with several officials from Florida, including Senator Bill Nelson’s staffer and Health Counsel, Corey G Malmgre.

There she was sitting along with me as I explained Deanna’s story and I began crying. She teared up and told me that these are the stories that she will always remember. It was empowering to know that she could possibly have a part in writing a new proposal for the fight against liver disease and the small children who fight every day, including those waiting for their call for a new liver.

Nothing is coincidence, and I say that because I’ve lived it. We meet certain people unplanned for a reason.

On my flight home back to Miami, Florida Senator Marco Rubio boarded my flight. Due to his busy schedule in the Capitol, I was able to only meet with one of his staffers. I was able to hand him a rounding card from this past year’s annual 5K which highlights Deanna’s story from her time of birth to the present. It was pretty powerful that he took the time to read it on the flight!”

Heidi and her entire family advocate daily for organ donation.  They collect band aids for the patients on the transplant floor at Holtz Children’s Hospital, participate in the Life Alliance Organ Recovery Agency (LAORA) 5K annual run, and advocate for the American Liver Foundation.

“As an ambassador of Donate Life, I strive to educate others on the importance of registering as a donor,” Anderson said. “Because of organ donation, Deanna has celebrated three birthdays, attends school, and eagerly wakes up early every Saturday morning to go to dance class.”

Deanna turns 4 in July. Her family hopes she can continue to be a poster child for this condition and the importance of organ donation.

To read more on Deanna’s Miracle story, click here.