Sharing with Harrisburg How Pitt’s Research Changes—and Saves—Lives

Together, they’ll travel by bus to Pennsylvania's Capitol to meet with state legislators, ready to share materials and stories highlighting Pitt’s commitment to and impact in communities, the region and state.

And like she has for the past four years, Kleebank will bring a personal story to share with lawmakers and members of their staff: The story of her daughter, Amelia, and how the University’s budget has a tangible impact on her family.

‘Just drop what you’re doing.’

Kleebank’s story begins on the first day of her daughter’s seventh week of life. “I had one more week before I was to return to work. Amelia woke up and the palms of her hands and feet were bright yellow,” she recalled.

She had looked forward to dressing Amelia up that morning to bring her to Pitt to show her off to her colleagues in communications before she returned to work, but her husband, Martin, convinced her to call their pediatrician. At first, her doctor wasn’t concerned but still recommended Amelia get blood work that morning—after which the family went to lunch.

By the time they returned home, there was an urgent message waiting for them: “Get to Children’s. Now. Just drop what you’re doing,” Kleebank recalled.

Staff at UPMC Children’s Hospital of Pittsburgh rushed her family past the waiting room. She recalled seeing the doctor pause to wipe her eyes before entering to deliver the Kleebanks the diagnosis: Amelia had biliary atresia, a rare liver disease that occurs only in infants and develops between two and eight weeks after birth.

Luckily, researchers at Children’s Hospital were conducting a study on the disease, but it required surgery before Amelia reached her eighth week of life. With the clock ticking, she underwent a series of tests to confirm the diagnosis and join the study before undergoing the risky procedure—one for which doctors projected a 13% of survival.

A transformative experience

Amelia survived that surgery, and in a few months, she will turn 12 “going on 18,” Kleebank said. Twice a day, she takes Ursodiol, a medication that treats primary biliary cirrhosis.

Ameila continues to participate in the liver study and now sees Veena Venkat, associate professor in the School of Medicine Department of Pediatrics, for follow up appointments.

Kleebank became passionate about advocating in Harrisburg on behalf of Pitt several years ago. Funding for the research study Amelia is enrolled in and receives care through was compromised when the appropriation funding for state-related universities like Pitt was held up in an impasse and delayed the passage of a University budget. 

She recalled learning that because the study’s funding had been cut, Amelia would no longer be able to see her regular phlebotomist, one the young child had built a relationship with since she started receiving treatment. 

“It was one of the worst times since she was a baby,” she said. “It took five of us to hold Amelia down to draw blood.” Afterward, she vowed to her daughter she would do whatever she had to do to ensure that such a traumatic event would never happen again.

When she returned to work the following day, she received an email with information about that year’s Pitt Day in Harrisburg event. She immediately signed up to go and was transformed by the experience.

“We got there and it felt like it was all of Pitt. There were tons of people shouting ‘Hail to Pitt!’ I’m walking down halls of the Capitol to hand out my packets and there were people coming out of offices and greeting us,” she said. “I was amazed by the students who presented their stories and research, because I was like, ‘Yes, you’re going to save my daughter’s life!’”

The following day, state lawmakers approved appropriations for Pitt. Kleebank remembers crying with her husband when she heard the news. And she has returned to Harrisburg every year since.

“I just felt like I got to say something, and somebody listened. And it’s because Pitt is more than a school. It’s more than teaching. We’re an economic driver, we have fingertips all across the world and the research we do changes people’s lives—and saved my daughter’s.”

Read more about the stories behind the impact of Pitt Day in Harrisburg 2019.