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Mary Peroutka, RNC-OB, BSN, has been helping patients deal with the death of a newborn for the past 13 years as perinatal bereavement coordinator at Howard County General Hospital in Columbia, Md.

More recently, she took on the informal role of coordinating a perinatal hospice program, which offers support during and after pregnancy to parents who choose to continue their pregnancies after learning their babies have fatal conditions.

Both services, provided free, are part of the Rising Hope program at Howard County General, a member of Johns Hopkins Medicine.

Peroutka’s efforts received a boost July 1 when Rising Hope received a $19,950 grant from the Horizon Foundation, Howard County’s largest philanthropy, to support one year of the perinatal hospice program. It is the first such program in Maryland.

“I think this grant will be [used] to set up the program, to establish the hospital policies that are needed, [and] to get the word out that the program is here,” says Peroutka, the Nursing Spectrum Nurse of the Year in DC/Maryland/Virginia for Community Service in 2005. “It would be to do education for labor [and] delivery nurses who are not used to a live baby being born who we let die because this baby does not have lungs and is not going to survive. It’s a hard step to take, so there’s a lot of staff education that has to occur.”

For the families, Peroutka’s work begins as soon as possible after diagnosis. She helps them formulate a plan of care, such as deciding whether they want the baby to come right to them after birth because they might have only a few minutes of life to share, or whether they want the baby to immediately receive resuscitation to provide as much life as possible.

Peroutka also helps families answer other questions, such as who they want present at the birth and what kind of, if any, religious service they prefer.

Some of the cases Peroutka encounters reinforce just how important her work is. She related the plight of one family who sold its home to pay for in vitro fertilization and moved into a trailer. The woman became pregnant with twins, only to learn the babies had a fatal condition. One baby died at 11 weeks, and the life expectancy of the other was six months to a year.

For all of the patients who use Rising Hope, Peroutka’s goal is the same: to provide support for families dealing with a situation in which few ever can imagine being.

“The most important thing is that there’s something there — there’s some place for them to get help so they don’t feel like they’re creating this path by themselves,” Peroutka says. “That there is someone who can help them along the path, so they don’t feel like they’re banging their heads up against a wall.”

Tom Clegg is a member of the editorial team at Nursing Spectrum.

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