Kid Captain: Zach Zwirlein

Nov. 22, 2013

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IOWA CITY, Iowa — When Zach Zwirlein was born at a Waterloo, Iowa, hospital in November 2000, he appeared to be a perfectly healthy baby boy.

Within a week, however, came shocking news: Zach had tested positive for medium chain acyl-CoA dehydrogenase (MCAD) deficiency. Patients with this disorder are missing the enzyme that helps the body break down certain fats and turn them into energy. Left undiagnosed, infants with MCAD deficiency can die if they develop an infection or go too long without food.

Zach’s diagnosis was possible thanks to the Iowa Neonatal Metabolic Screening Program — a partnership of the genetics program at University of Iowa Children’s Hospital, the Iowa Department of Public Health, and the State Hygienic Laboratory. Newborn babies’ blood samples are collected at hospitals across Iowa to test for dozens of inherited diseases.

The newborn screening program had expanded to include the MCAD screening just a month before Zach was born. In fact, he was the first baby in Iowa to be diagnosed from the new screening results.

“They say timing is everything, and I’m a firm believer in that now,” Zach’s mother, Alicia Fuller, says.

UI Children’s Hospital genetics specialist Judy Miller, ARNP, educated Zach’s parents about MCAD deficiency. She reassured the family, despite some of the grim information available.

“When I pulled up a website, it said one out of every four babies die from it,” remembers Alicia. “My heart sank.”

But Miller reminded Alicia that those statistics referred to children with undiagnosed MCAD deficiency. When Zach started kindergarten in Iowa City, Miller met with the school’s nurse and principal to educate them on what to watch for regarding Zach’s health.

If Zach becomes abnormally tired, lethargic, aggressive, or ill, his parents know to monitor his blood sugar and contact the hospital.

“UI Children’s Hospital has done a great job educating us. That’s been our biggest weapon,” says Alicia.

Today, Zach is a typical teenager with few limitations. He is on a high-carbohydrate, low-fat diet and takes medication that helps his body remove toxins to keep him healthy.

Zach’s family is grateful for the personalized care he has received since birth.

“The staff at UI Children’s Hospital have been very supportive,” Alicia says. “They take the time to listen when we have a concern, or if we’re not sure on something they encourage us to ask questions.”

Alicia credits a proactive group for expanding newborn screenings to include MCAD deficiency in Iowa.

“There was a committee from the University of Iowa who fought for the expanded newborn screening,” remembers Alicia. “Without them and their push for the screening we wouldn’t know Zach had MCAD deficiency and he may not be with us today.”

This year marks the 50th anniversary for newborn screenings, and Zach’s family has a reason to celebrate. “Any time they need somebody to fight the fight for them to keep expanding newborn screening, I’ll be right there with them,” says Alicia. “It saved my child’s life.” You can watch Zach’s story HERE.