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Losing daughter inspires mom to form hospice

Oct. 21, 2020

By Darcy Fargo

LYON MOUNTAIN – After choosing to give birth to a daughter she knew she wouldn’t get to take home from the hospital, Sarah Munn Wojtaszek is honoring that daughter by forming a charitable organization to aid families who experience a pregnancy loss or infant loss.

Wojtaszek is the founder of Healing Grace Perinatal Hospice. The organization is based in Lyon Mountain, but hopes to serve the entire North Country region.

“Healing Grace has my daughter’s name in it,” Wojtaszek said. “In 2008, I was pregnant with our first child. At the 20-week ultrasound, the baby was diagnosed with anencephaly, a neural tube defect. It’s a terminal diagnosis. At the time, my husband and I were living in a suburb of Kansas City. The law there for termination said the pregnancy could be terminated up to 21 or 22 weeks. I was given the option to proceed with the pregnancy or end the pregnancy. Truth be told, my first reaction was to end the pregnancy. I couldn’t say those words, but that was my thinking.”

Wojtaszek said her husband, Keith, supported her in whatever decision she felt she had to make.

“My husband was like, ‘I’m here for whatever you need. You have to do what you have to do,’” she said. “I went to the doctor to schedule the termination. I went in on a Friday and was scheduled for the termination on Tuesday. We wanted to name the baby and give the baby a funeral, and we were just experiencing a lot of feelings. We started praying and reading the Bible. The Scriptures for that Tuesday – the day we were supposed to terminate the pregnancy – was Matthew 18:5, ‘And whoever receives one child such as this in my name receives me.’ We looked at each other, and we knew we couldn’t terminate the pregnancy. We knew were going to carry the baby to term and give the baby a name.”

Once they decided to carry the baby to term, the Wojtaszeks were referred to Alexandra’s House, a perinatal hospice in Kansas City.

“We met other families who had lost babies due to infant loss or miscarriage,” she said. “We met with the groups, and they supported us through the pregnancy.”

While babies with anencephaly often don’t make it to full-term, Wojtaszek’s baby, a girl named Grace, did.

“She could’ve passed at any point,” Wojtaszek said. “Babies with this diagnosis don’t normally go to term. If they do, they don’t usually survive labor.”

Wojtaszek’s pregnancy advanced to nearly full term, and she worked with her medical team to form a birth plan “and to plan how we wanted the day to go.”

“The best way to go was c-section,” she said. “We met with a priest, and he agreed to come into the birth so she could be baptized as soon as she was born. When she was born, Grace lived about five hours.”

When the Wojtaszeks moved back to the North Country, they realized there was no perinatal hospice to provide families dealing with pregnancy or infant loss with support.

“There’s nothing here supporting these families,” Wojtaszek said. “When we were in Kansas City, we had all of this help and information laid out for us. We had people supporting us. Since we were falling apart, there were people there to hold us up. By being part of the (Alexandra’s House) group, and using the group as a healing center, it started to lessen my hurt. The more I talked about Grace and made her real in my life, the more she was still real, and the more I felt like she was still part of us. I want people here to have that support and that experience.”

Healing Grace Perinatal Hospice was born.

“I worked with a business coach, and things started to progress,” Wojtaszek said. “I got a lawyer, and the lawyer did all the required paperwork free of charge. I’m working toward my dream of honoring my daughter with a perinatal hospice here.”

Wojtaszek, the organization’s executive director, is working with other volunteers who form the board of directors for Healing Grace. The board includes Physical Therapist Kathryn LaValley, Physician Assistant Megan Baker, Keith Wojtaszek, Lisa Wells, Father Christopher J. Looby, Dr. Anthony Garami, a pediatrician, and Dr. Ariel Goodman, a professor of counseling at SUNY Plattsburgh.

“We hope to by operational by the new year,” said Wojtaszek. “Funding is a huge issue right now. And we’re working on developing what services we’re going to provide starting out. We’re developing a website – a place where people can contact us and refer families. We’re going to start with peer support groups. Working with Dr. Goodman, we’re hoping to eventually have clinical support groups and hopefully a psychologist on staff.”

Healing Grace is working with the local medical community to create a peer support system that could support families experiencing miscarriage or infant loss.

“We’re hopefully going to get therapists that are trained in this specific area,” Wojtaszek said. “Long-term, we’d like to have a retreat center in the Adirondacks where we can create a network of families to support one another, commiserate and talk.”

Wojtaszek said the organization would like to help families both immediate after a loss and those who suffered a loss years ago but still want support.

“We want to reach out to anyone and everyone who’s experienced a loss,” she said. “We want to provide help and support. We’re hoping to extend as far away as Watertown and Burlington. There’s nothing else in the area offering this type of support.”

Wojtaszek and her husband, Keith, now have two daughters, Julia and Anasthesia, in addition to Grace.

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