Alpha Stories

Published on Friday, March 16, 2012

The grim diagnosis…

The grim diagnosis…

Alpha-1 hasn’t kept these liver kids from living full, satisfying lives

In the summer of 1986, Mike and Julia Berger had their first child, Jake.

Jake had yellow skin and eyes, and his bilirubin count was very high.

Family and friends in their home town of LaGrange, IL, encouraged Mike and Julia, saying things like, “Jaundice is very common in infants,” and “Don’t worry about it. It will clear up.”

And it did clear up.

But Jake’s pediatrician insisted on additional tests to find out why the bilirubin count was so high to begin with.

He decided to test Jake for Alpha-1. When the test came back positive, the pediatrician referred Mike and Julia to a gastroenterologist. The second test confirmed that Jake had Alpha-1.

“The news came from a teary-eyed physician who added that we needed to get Jake on the organ donor list to save his life. I’m sure it was because of her lack of familiarity with Alpha-1, but we were new parents. It was just devastating,” Mike says.

Fortunately, the physician was over-reacting. Jake’s liver function gradually worsened until he was about 18 months old. Then it remarkably improved and stabilized. Today, at 22, Jake remains nearly symptom-free.

Along came Cate in 1989, and she was tested immediately. She was diagnosed as a carrier, and her parents were told that she wouldn’t experience any symptoms of Alpha-1.

Mike and Julia were so happy. Now, they had two beautiful children, and while Alpha-1 was present in their lives, it hadn’t been so bad at all. So, they decided to have another child, and in 1993 Molly was born.

“She wasn’t jaundiced at all,” Mike said. “Had she been our firstborn, we wouldn’t have tested her.”

But because of the Berger’s family history, Molly was tested. She had Alpha-1. And even though she wasn’t jaundiced, Molly’s numbers were worse than Jake’s.

While Jake only needed annual checkups, Molly saw her gastroenterologist every six months. When Molly was four, her test results began showing signs of liver damage. A biopsy showed that her small body already had some minor liver fibrosis. But continuing tests after that showed that the liver wasn’t worsening.

And at 15, Molly and her Alpha-1 liver are still doing fine.

“Growing up, you could tell that Cate felt somewhat left out. Here you have Jake and Molly who have this Alpha-1 thing, and they have to see specialists for it,” Mike says. “She never truly said it, but you could see it in her face.”

But while Jake and Molly were busy at the gastroenterologist’s office, Cate found herself seeing a different kind of specialist. When she was 12 years old, she was diagnosed with scoliosis, an abnormal curvature of the spine. Cate’s spine would have to be fused together and supported by rods and brackets.

Despite the setbacks that all three children had growing up, each has persisted through these and other setbacks.

Jake is now 22, and 6 feet 8 inches tall. In high school, he played many competitive sports, including soccer and volleyball. (No, no basketball.) In 2008 he graduated from the University of South Carolina with a double major in international business and accounting and a minor in Spanish. Now, he’s going for his master’s in accounting at the University of Notre Dame.

Cate, 19, is a sophomore at Brown University’s Program in Liberal Medical Education (PLME) and is studying to be an emergency room physician. She also rides for Brown’s equestrian team.

Molly is 15. She’s a sophomore in high school and plays volleyball on the varsity team as well as at the competitive club level. As the setter, she led her team to a silver medal in the 2007 Junior Olympics. Her hope is to play the sport in to college, where she will study physical therapy.

“Alpha-1 has re-focused how my kids have looked at things. They tend to stay active, eat healthy foods, and avoid environmental pollutants,” Julia says.

Other than reinforcing these normal standards for healthy living and scheduling annual visits with the gastroenterologist, there’s no difference between Jake, Cate, Molly, or any other child with or without Alpha-1.

“We’ve been so blessed and so fortunate that Jake and Molly are asymptomatic,” Mike said. “The research that is being done, earlier diagnosis, drug therapy treatments, and the longevity of transplants – all these factors have improved tremendously. Julia and I are so much more optimistic that our children will have long, happy, and healthy lives.”

Michael W. Berger died suddenly Dec. 3, 2010. He was 52. The family asked that those who wish to do something special for Mike, do a kind deed in his memory. Mike and his family would encourage all to complete organ donor cards.