During dinner on Valentine’s Day, 2015, John Rohrhoff suggested that he and his wife, Katie, do something special to honor their late daughter, Riley Katheryn, who died as an infant.
That was three years ago today, and in that time, the Riley Katheryn Foundation has helped more than 50 families and provided more than $20,000 to parents grieving the loss of an infant. Last year, Katie Rohrhoff ’05 was honored for her work with the nonprofit when she was named a member of the 2017 Oakland County Executive’s Elite 40 Under 40 class.
It’s a position no parent wants to be in, but one the Rohrhoffs had thrust upon them when, nine months after their wedding in 2008, the couple learned they were expecting twins.
“Things were complicated throughout the pregnancy,” Rohrhoff ’05 remembered. “As much as you are told things can go bad, you are never prepared for it when they do.”
Ten weeks before her due date, Rohrhoff was rushed into an emergency cesarean section in an attempt to save her twin girls. One of the twins, Riley Katheryn, did not survive. Her identical sister, Payton, was sent to the pediatric intensive care unit.
“We had so much support from coworkers, our friends, the community, the hospital and even strangers who reached out,” said Rohrhoff. “We had a baby to take care of and we had to balance that with the grief of losing Riley.”
They didn’t know then that the sadness they felt would lead to a foundation that would help so many others.
During that dinner on Valentine’s Day, Rohrhoff says her husband told her he wanted to help families who go through a loss like they did. The couple filed the nonprofit paperwork with the state, were quickly approved and set to work.
The Riley Katheryn Foundation raises money to help Michigan families pay for the funeral and burial expenses for children who have not yet reached their first birthday. It also raises awareness of pregnancy loss and infant death and provides support to those who have been through it.
“When it comes to funerals, things can get really expensive,” Rohrhoff said. “It’s not like you have money set aside to pay for those types of things for your infant child. Our goal is to take a good chunk of that bill away. When there isn’t much anyone can do, I feel like this is a way we can ease some stress for these families.”
The foundation raises money through its annual event, Picnic in the Park, as well as a beer- and wine-tasting event. Donations are also raised through other events held by families in memory of their children.
“I get paid zero dollars, but it’s the best job in the world. I think the joy and the healing and everything that it has provided me has been more than worthwhile,” said Rohrhoff. “We are strictly a volunteer-based organization. One-hundred percent of the money we raise goes toward helping families.”
With the help of a local funeral director on their executive board and referrals from families and friends, the Rohrhoffs have connected with more than 50 families who have lost an infant. The families get more than just financial support, they also join a network of parents who have experienced a similar tragedy.
“I didn’t know anyone closely who had lost a baby,” Rohrhoff said. “I feel like when that happened to us, everyone came out of the woodwork with their stories. I think this foundation has brought awareness on how often this happens. Even eight years later, for us, there are moments and days that are really difficult. We have this group of families we can reach out to and talk to who understand what it’s like.”
In 2017, Rohrhoff learned she was nominated for the 40 Under 40 award for her work with the Riley Katheryn Foundation.
“I didn’t think I would be selected. I was incredibly shocked and humbled. I’m just glad that they thought my work with the foundation was worthy of the award,” she said. “It also gave me a chance to tell more people about the foundation. The more people we can help, the more people will continue to support us and give back.”
In addition to the foundation, Rohrhoff is a pediatric nurse at Huron Valley Hospital, the same hospital where Riley passed away.
“I think it’s made me a better nurse,” Rohrhoff said. “When situations come up at my job, I can relate to the families and what they are going through. With my experience, I’ve been able to help people and other nurses understand or be less afraid of grieving families.”
“I guess I had no idea in the beginning how this would go,” she said. “I thought, ‘let’s just raise a couple thousand dollars and help a couple of people.’ Now, we’ve been able to help so many families with more than $20,000 worth of assistance,” said Rohrhoff.
Through her work as a nurse, Rohrhoff has several ideas for expanding the Riley Katheryn Foundation.
“We have set other goals besides just helping families. We’ve talked about education for hospital staff and education for the community in general,” Rohrhoff said. She said the possibilities are endless, and it’s humbling to see how far the foundation has come.