Family's loss leads to $25 million in donations to Children's and the Herma Heart Institute
Bill Glauber
WAUWATOSA - It started with a Thanksgiving turkey lunch provided by grieving parents who wanted to thank doctors and nurses who valiantly cared for their child.
Then came a rocking chair to help other families whose children suffered from congenital heart conditions.
And over the years, and decades, the gifts from John and Susan Herma kept coming and growing, with the family contributing more than $25 million overall.
On Friday, Chldren's Hospital of Wisconsin officially unveiled the Herma Heart Institute, marking the end of a successful $16 million fundraising campaign that began with the Herma family's $8 million challenge gift.
Previously known as the Herma Heart Center, the new designation as an institute is the first for the hospital. With it comes a commitment to meet national benchmarks on patient care, outreach, research and philanthropy. The institute is renowned and performs 650 heart procedures annually, with some of the best outcomes in the world, the hospital says.
"It's who we all are, the whole team," Susan Herma said. "We are the Herma Heart Institute. It's not about John and Susan Herma."
The Herma family has long remained out of the spotlight, quietly giving while also helping provide leadership at the hospital. John Herma is a former chief operating officer and board member at Kohl's Corp. Susan Herma is a powerful health care advocate and served a long stint on the Children's Hospital board.
Their middle child, Leigh, was born in September 1987 with a hypoplastic left heart syndrome, which affects normal flow through the heart. At the time, only 10% of infants with her diagnosis survived. Since then, treatment has been revolutionized, especially at the Herma Heart Center.
Leigh spent the 3 months of her life in intensive care at the old Children's Hospital, then located near Marquette University. Doctors made heroic efforts to save her but were unsuccessful.
The Hermas would never forget their experience at the hospital. The staff was devoted. But in those days, the surroundings were cramped, families huddled over their children lying in cribs.
"Back then, there was no place to sit, no place to pump your breast milk," Susan Herma said. "I shared the closet with the janitor. When I put the broom outside, he knew I was in there. There were no locks. There was no place to go."
When she held her baby, she stood next to the intensive care bed.
And now? Chidlren's Hospital's cardiac intensive care unit is a 21st-century wonder, outfitted with the latest technology and private rooms for 24 patients. Families come in and out of what is essentially a home away from home.
At first, the Hermas' gifts were small. The turkey lunch. The rocking chair. Two years after their daughter's death, they returned to the hospital and said they wanted to become supporters. S. Bert Litwin, the doctor who had once cared for their child, told the Hermas that the hospital had only one ECMO machine, a modified heart-lung machine.
"They had two children that needed ECMO and one had to be transported to Chicago and the child died," John Herma said. "So, we immediately donated money for a second ECMO."
For the Hermas, it was a big step.
"If we could make a difference right away anywhere it would be that ECMO machine," Susan Herma said.
A year later, they donated money for another ECMO machine.
In the name of their late daughter, they created a chair in pediatric cardiology. Another gift helped the hospital reorganize doctors and providers to better serve patient families and created a physical space to bring them all together.
Maryanne Kessel, who was a bedside nurse who cared for Leigh Herma, and is now development director of the Herma Heart Institute, has observed the Hermas' devotion to the hospital over the decades.
They work hand-in-hand, Kessel said. "John is analytical. Susan is the passion."
The latest gift is part of an evolution.
"It allows us to continue to advance research in how we can continue to help kids not ever have to suffer from a cardiac malformation," said Peggy Troy, Children's Hospital president and chief executive officer.
The Hermas said they want to continue research into congenital heart deformities.
"It's just an ongoing support of what the team and the medical staff here is doing," John Herma said.
Troy said the Hermas are very involved in the program.
"They're just amazing people who obviously had a tragedy in their life with the loss of their daughter but were able to turn that into a driving force," she said.
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John Herma said that despite his family's tragedy, he and his wife saw how hard doctors and nurses worked to save their child.
"How can we continue to build this and not let another mom and dad go through what we went through?" John Herma said. "It has been a 30-year journey."
"There's a purpose for every one of us," Susan said. "We're here for a purpose. We have a job and we're called home when our job is done. I felt that way about our daughter. She was here for a reason. She was telling us something and in my opinion this is where she was showing us where we were needed.
"As I look at all these children that come by and reports that they're being saved and having a good life and growing to adulthood, it's a testimony to our daughter."