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Surviving the saddest loss: CNY-PIBN provides resources for those facing perinatal and infant loss

October is Perinatal and Infant Bereavement Awareness Month, and Oct. 15 is set aside as a day of remembrance and awareness for these types of deaths. Central New York Perinatal and Infant Bereavement Network (CNY-PIBN) provides support for families who have suffered such a loss.

October is Perinatal and Infant Bereavement Awareness Month, and Oct. 15 is set aside as a day of remembrance and awareness for these types of deaths. Central New York Perinatal and Infant Bereavement Network (CNY-PIBN) provides support for families who have suffered such a loss.

— Before the CNY-PIBN formed, the Syracuse hospitals with obstetrical services each had a bereavement program to support families going through the tragedy of perinatal death. Those groups, under the leadership of Crouse nurse practitioner Joanne Chamberlain, started a Walk to Remember, which continues to be held the first Sunday of October each year; the 20th annual event was held earlier this month. Additional events include a celebration of life the first Friday in June, as well as a candle lighting ceremony the second Sunday of December, initiated and coordinated by Helen O’Neill, an original member of the walk committee. The 14th annual candle lighting will be held Dec. 8 at May Memorial Church.

The organization’s website, cnypibn.org, includes a list of resources such as support groups, counseling services, health department offices and more, organized by county. To honor their children, many parents have contributed to the website formation. They also provide literature for the organization’s library as well as volunteer with the activities of CNY-PIBN.

“The main goal of all of this work is for families to feel less isolated, to support families who may not have any other sources of support,” Press said, “to have family members, children, see that they’re not alone in this experience.”

Moreover, Press and Farrell are working to launch a parent-to-parent support group.

“I did run a support group for nine years,” Press said. “What I found was that people were not coming and that they were getting support online. But periodically we will get people who will say, ‘Janet, I really need to talk to somebody.’ We’re looking at parent-to-parent kind of training so that a parent in the initial stages of a loss can connect to someone who had a similar experience.”

Farrell said she thought such a group was important.

“For a long time, I would be mad at myself if I found myself laughing, which wasn’t for some time, but you question yourself. How can I do that when I’ve just lost my child? How can I be okay enjoying that?” she said. “For us, the next week was Thanksgiving, and certain family members of ours just didn’t get it, and they’re just going on with their day like nothing was the matter, and you just wanted them to acknowledge it, but they’re not going to, and you have to find a way to accept that. With this group Janet’s trying to put together, just to have someone to chat with about simple things, I think it’s important.”

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