Mary Peroutka helps parents on a heartbreaking journey. As founder of the Rising Hope Perinatal Hospice Program, she guides them from the wishes and hopes of pregnancy through to the death of a child they'd come to realize wouldn't be in their arms for long.
Located at Howard County General Hospital in Columbia, Maryland, Rising Hope is a resource for parents who've been told that their fetus has a fatal disorder but decide to continue the pregnancy. "It's for families who find out their babies have a life-limiting condition that will cause death before birth or soon after," said Peroutka, a nurse for three decades.
The program helps parents prepare to deal with the end of a life that's just begun, as well as life after the loss. It was a natural extension of the hospital's perinatal bereavement program, which Peroutka had been involved in for 15 years, and which helps parents through miscarriages and the deaths of their infants. "We spend time with the family and give them mementos, like blankets or the babies' footprints or handprints," she said.
Starting Rising Hope proved to be a personal odyssey for Peroutka. "I feel like I'm an entirely different person than I was 20 years ago," she said. "I used to be terrified of death. Now I realize that birth and death are very important times in our lives."
A career in labor and delivery. Peroutka, 52, was raised in Maryland and graduated from Towson University in 1980 with a bachelor of science in nursing. She began her career in obstetrics at Franklin Square Hospital in Baltimore. "When I came out of nursing school I avoided death at all costs," she recalled. "And I worked with people who let me continue that way. Other nurses who could handle it would switch patients with me."
After she married, Peroutka moved with her husband to Montana, where she worked in a neonatal ICU (NICU). "We served a huge area," she said. "We did our own transports on fixed-wing planes or by ambulance. We covered Indian reservations."
After a brief period working in Cleveland, Ohio, Peroutka returned to Maryland in 1990, to Howard County General, part of Johns Hopkins Medicine. Five years later, she was the mother of three young children when her own mother died suddenly at the age of 58. It was Peroutka's first personal encounter with death.
"We tried to make our kids comfortable with what was going on," she remembered. "But the experience made me realize that we needed to change what we were doing in the perinatal bereavement program for our families. We needed to be able to take the worst experience parents will ever have in their entire lives and give them the tools and skills for healing."
Peroutka heard about a training program for bereavement counselors called Resolve Through Sharing at Gundersen Lutheran Hospital in La Crosse, Wisconsin. She went to see it on her own time. "I learned so much," she said. Then a few years ago, she attended a conference on perinatal hospice care. "I asked our CEO in an e-mail on a Friday afternoon if we could do something like this," she said, "and within 10 minutes I had an answer." She drafted a proposal for a grant from the Horizon Foundation, a local institution with a mission to enhance the health and wellness of the community, and it gave her $20,000, enough to develop a program.
About 20 families have gone through the Rising Hope Perinatal Hospice Program since it started in July 2009. It has provided resources and unending support to parents facing difficult decisions and an uncertain future who may also have lost their support system. "Some women opt to terminate the pregnancy if they're told the baby won't live," said Peroutka. "And those who choose to continue feel like they don't get the support of their obstetrician or friends, who ask, 'Why are you doing this?'"
Although Howard County General doesn't perform pregnancy terminations, Rising Hope isn't a pro-life program and religion doesn't play into it, she said. "Ending a pregnancy doesn't end the loss of dreams and hopes of who that child might be. We'll ask if parents want a blessing or a baptism, but it's not about religion; it's about providing everything families need."
The program attempts to empower parents to think about what's important to them in caring for their infant in its final days or after death. "Parents should be offered the chance to do everything for their baby," Peroutka said. "Holding and naming the baby-some want those moments. It's an opportunity to be parents; why should we steal any part of it from them?"
Peroutka mentions another population-parents who have very premature babies, who had no warning that they'd have such a limited time with their children. "We treat the preemies like any other newborns," she said. "We ask the mother if she wants to hold the baby on her skin. We allow the baby to hear the mother's heartbeat, to have the remainder of its life be a comfortable one."
A case in point. Julia Perocier first met Peroutka on March 22, 2007, the day after her firstborn, Ivan, passed away. He was born at 22 weeks.
"At that point, we had no idea what we had to deal with," said Perocier. "I'd never had to do funeral arrangements in my life." The nurses in the NICU focused on the moment, providing her with Ivan's blanket and casts of his tiny feet. "Mary prepared us for what would come after," Perocier said. "She sat with us, talked to us, gave us information about Rising Hope. She helped us survive."
Perocier now has two sons: Julian, born in April 2008, and Giancarlo, born in September 2010. "I had the confidence to try again because of the Rising Hope support group," Perocier said. "You feel very alone, but the support group gives you a safe environment." She tries to stay involved with the group as much as she can. "I try to go at least once a year and help out by talking to parents," Perocier said. "I'm so very grateful."
The bereavement counselors at Rising Hope keep in touch with parents and want them to know they don't have to make the journey alone, that there's help that can make it more hopeful.
"It's a lot of work," Peroutka said. "You have to feel it in your gut . . . not everyone does."
Peroutka said she's realized that whether you're here on earth for a long time or a short time, "the most important thing is to make the most of the time you have between journeys."-Patrice O'Shaughnessy