Organization offers ‘hospice in the womb’

By SARA ARTHURS
Staff Writer
DESHLER — For parents who learn their unborn child cannot survive, a Deshler nonprofit organization offers support and helps them make what memories they can.
Kelly Gerken created Sufficient Grace Ministries in 2004 to assist families who have lost infants to miscarriage or stillbirth.
For several years, the organization has offered keepsakes such as a memory book and a “comfort bear” for a mother to wrap her arms around. More recently, the organization has expanded into perinatal hospice.
Perinatal hospice is, in essence, “hospice in the womb,” Gerken said. The idea is that if a parent-to-be learns the unborn child has a fatal diagnosis — the term Gerken uses is “life-limiting diagnosis” — but wants to continue the pregnancy rather than terminating it, the perinatal hospice volunteers will offer support as they prepare for birth and for the baby’s death. Some babies are stillborn while others may live for several days after birth.
Gerken is the organization’s president, founder, director of perinatal hospice and bereavement services, and a birth and bereavement doula.
She has experienced loss herself. In 1996, she was pregnant with twins and learned they suffered from “twin-to-twin transfusion syndrome,” in which one baby receives too much blood flow and nourishment in the womb and the other baby receives too little. Doctors induced labor after an ultrasound revealed that both babies’ hearts had stopped beating. Faith and Grace were stillborn on Nov. 3, 1996.
A year later, the Gerkens conceived again. Midway through the pregnancy they learned the baby had Potter’s Syndrome, in which there are no kidneys and the lungs develop poorly. Baby Thomas was born alive on July 14, 1998 and lived for six hours, as Gerken held him and sang to him.
Years later, Gerken has been devoting herself to helping other grieving families.
“Because Faith and Grace and Thomas lived, because my children lived, so many people have been comforted … That is a gift,” she said. “It is a beautiful, beautiful, sacred gift.”
Gerken and other volunteers began researching perinatal hospice in 2011 and learned that it offers parents the chance to carry a pregnancy to term “and to just soak in that time with their child.”
But even in the medical community many people aren’t aware of it, she said.
Gerken and others from Sufficient Grace met with staff at a perinatal hospice in Rockford, Illinois, to learn more about what they did. The Rockford perinatal hospice offered advice on getting a perinatal hospice program going. In 2012, Gerken left her full-time job to devote herself to Sufficient Grace and its perinatal hospice program.
Gerken and other volunteers have been trained as “birth and bereavement doulas,” meaning they can assist their clients in the delivery room as well as after the birth and the death of the baby. Their main role is to support the family as they decide what to do with the time they can spend with the baby, “not so much to whisk the baby away.”
Gerken said the intention is for families to know all the options available, to consider what they want for a birth plan, whether they want to bathe or photograph their baby, and whether they want other family to come into the room to meet him or her.
Many of Sufficient Grace’s volunteers have themselves experienced such a loss.
Sufficient Grace brings in a photographer who can take pictures of the baby. The organization also offers gowns and wraps in various sizes so parents can dress the baby.
Gerken said hospital nurses often have a lot of compassion for families, but because they have other duties they cannot sit by a bedside for a long time. That’s where the birth and bereavement doulas come in.
Photographs of the baby may not be something parents think about, since “you’re just dealing with the shock and trying to process that loss,” but it may have meaning for them down the road. Gerken has heard from parents who regret not having photographs taken.
In many cases, Sufficient Grace works with a family throughout a pregnancy, so they know the parents by the time of the birth. However, they can also come in when there is a stillbirth even if they have never met the family.
Sometimes, babies live for some time after birth. Gerken recently helped a family whose baby lived for several days. The parents were able to take him home and spend time with him.
“That was such a miracle and a gift,” she said.
Studies show that offering perinatal hospice and bereavement support increases the number of those who continue with a pregnancy with a fatal diagnosis from 20 percent to 75 percent, according to a Sufficient Grace perinatal hospice brochure.
“Hope replaces some of the hopelessness, as parents are empowered to make decisions on behalf of their baby and family,” the brochure states. “It does not take away the agony of the impending loss, but there is a sweet gift in giving your baby and yourself the opportunity to embrace life, no matter how brief. We want parents to know they are not walking this path alone.”
The first hospital to use Sufficient Grace as an official bereavement program was Defiance Regional Hospital. The program was funded by a grant from the Defiance Area Community Foundation and Defiance Hospital Foundation and Auxiliary. Gerken and others trained emergency room, operating room and obstetrics staff at the hospital.
“They were so open” to working with Sufficient Grace, Gerken said.
The hospital wanted to revise its booklets for parents who have lost a baby to miscarriage. Gerken has written a booklet that she made available.
There is also a booklet specifically aimed at fathers. Men aren’t as comfortable talking about their loss and may not want to go to a support group, but they benefit from knowing other fathers can relate, Gerken said. “I think it’s very powerful that dads spoke these words in their language,” she said.
Since then, she has been reaching out to other hospitals, some as far away as Columbus and Cleveland. Gerken said Sufficient Grace wants to work with more hospitals in northwestern Ohio.
“The hospitals who are using this program see the difference,” Gerken said.
She said nurses and doctors are telling her it helps not only the parents but also hospital staff.
Gerken said it means a lot to the families to see that their baby’s life is treasured. Parents feel validated that they are allowed to grieve, with the help of perinatal hospice, she said. “Validation is very important for families,” she said.
In addition to parents, Sufficient Grace volunteers work with other family members. Gerken said sometimes the baby’s grandparents will seem strong in the delivery room but later need to talk. The baby’s older siblings may have questions and Gerken recently talked with a 4-year-old brother of a baby. “I pretty much just let the children lead,” she said.
Sometimes, she said, parents try to protect children by not talking about the loss, but “kids are experiencing grief and loss, too, at their level,” she said.
Sufficient Grace Ministries is a Christian faith-based organization but serves families of all faiths. “If they want us to pray with them we will,” Gerken said. “But if they don’t, that’s OK.”
Last year, the perinatal hospice program served 30 families.
While Sufficient Grace is based in Deshler, it has helped families throughout the country and in other parts of the world who have found them online and requested memory books or comfort bears.
In some cases these families want to help others, so Sufficient Grace is in the process of starting branches in other states.
It’s a nonprofit organization with an all-volunteer staff, including Gerken. In the future she intends to reach out for more funding and hire a paid staff.
“Definitely we have plans and prayers and hopes to expand,” she said.
The organization receives most of its funding from donations from individuals and churches, but also applies for some private grants.
Services are provided at no cost to the families served.
Gerken said Sufficient Grace is in need of more volunteers, for tasks ranging from sewing comfort bears to taking photographs. Anyone wanting to volunteer can go to the organization’s website or call Gerken at 419-722-6978.
Sufficient Grace holds a monthly support group at 7 p.m. on the first Monday of each month at its office, 300 S. Chestnut St., Suite A, Deshler.
Online:
www.sufficientgraceministries.org
Arthurs: 419-427-8494
Send an E-mail to Sara Arthurs

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