The smell of Laurie Farrell’s daughter is starting to fade from the box of mementos she brought home from the hospital five years ago.

The contents of the hand-painted box — a Beanie Baby, a receiving blanket, a small knitted cap, a crocheted blanket, a tiny gold ring and a bracelet — is all Farrell has left of her little girl. Emily was stillborn in November of 2008.

“These are things she wore, and these are amazing mementos for me as a parent,” said Farrell, of Onondaga Hill. “Every year when I open it up on the anniversary date, I can still smell her.”

Sadly, Farrell’s story is hardly unique. Many parents have suffered the loss of an unborn child or infant. About 1 in 160 pregnancies result in stillbirth, and 25 percent of pregnancies end in miscarriage. Infant loss is also all too common; in the U.S., about 19,000 babies die within their first month of life, whether it’s due to birth defects, prematurity, low birth weight or unknown causes (SIDS). 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.

“We’re not supposed to outlive our children,” said Janet Press, RN, perinatal obstetrical coordinator and bereavement coordinator for Central New York’s hospitals. “It’s not the natural order of things. It makes you question everything.”

Creating a network

Fortunately, there is support for those families who have suffered such a loss. Press is a founding member of the Central New York Perinatal and Infant Bereavement Network (CNY-PIBN), which brings together professionals from Crouse Hospital, St. Joseph’s Hospital and Health Center (their program is coordinated by Mary Ann Dwyer), Upstate University Hospital and the Sudden Infant and Child Death Resource Center, as well as bereaved parents, to provide resources for grieving families, including literature, social events and referrals to counseling. Each hospital provides a variety of services to bereaved families while they are hospitalized. Upon discharge, those families continue to receive support be notified of CNY-PIBN services and support when they are discharged from the hospital.

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.”

Finding the lost

For a lot of families, learning that support is out there is half the struggle.

“There’s many ways people come to us,” Press said. “We have our Sudden Infant and Child Death Resource Center, so Clemencia Molina pulls in people in the community and gets information referred to her from the community. St. Joe’s and Crouse and Upstate pull in from prenatal care and then a loss, and we each have our own systems of how we follow up with those families.”

If a child is stillborn or dies shortly after birth, it’s also relatively easy for Press and the rest of the CNY-PIBN team to receive word and to reach out to those families. With a miscarriage, however, women and families are much less likely to find their way to the CNY-PIBN.

“Sometimes they come in through an emergency department and women go home, so they’re in that state of not necessarily knowing where they’re at in terms of a loss,” Press said.

Farrell suffered three miscarriages in addition to losing Emily; she’s battled infertility, as well. She also has two healthy sons.

“I wish I had known about this when I had my first miscarriage [in Western New York], because the nurse in the emergency department was not kind,” she said. “He just kept giving me statistics.”

Farrell said though the experience of losing Emily was significantly more traumatic, the treatment she and her family received at Crouse was above reproach.

“We were very well taken care of,” she said. “Being in that situation and hearing other mothers give birth, to have that joy, was very difficult for me. I had to be on this floor with other mothers giving birth to healthy children. But I was separated in a way. The nurses were very attentive. I had all my family here — parents, sisters — and they provided a room for them. That was the beginning of my respect for this organization and this hospital. I have nothing but good things to say about that aspect of the experience.”

Press said CNY-PIBN steps in from the beginning to ensure that families aren’t disrupted by well-meaning staff during their grieving process.

“We actually have door cards that we put up with the families’ permission to let the staff know what’s going on, so they’re in a very supportive environment, and also an environment where people know,” she said. “When people go back out into the world, the world’s going on just like it did before they came through these doors and had this horrible thing happen. We try and warn them that it’s going to be an adjustment and give them some tools so they can be prepared to deal with things at the pace they want to deal with them.”

Those tools include literature, which Farrell herself found very helpful, referrals to counselors and, in some cases, recommendations for additional testing.

“We do, in some cases, recommend autopsy or different kinds of testing to give families answers,” Press said, “and sometimes that’s successful and sometimes it’s not.”

In addition, the organization offers photos of the baby, which both Farrell and Press agreed are incredibly important to the healing process.

“I think it’s important to have the photos done, whether you look at them or not,” Farrell said. “I have. My husband never has.”

“Photographs are incredibly important,” Press said. “Some people might find that kind of a gruesome thing, because in our culture, it’s not like we take pictures of people who have passed. However, we have very little time with this child. So they do serve a lot of purposes for families — to remember what this child looked like, to share what this child looked like. Other families don’t realize that a baby, even at 20 weeks, looks like a baby. They can share that with other people and get more support. This was a baby, not ‘just a miscarriage.’”

Each hospital also provides the mementos like those the Farrells took home, as well as the box in which to keep them. The clothing, like the crocheted blanket and the knit cap, are provided to the local hospitals by two local Threads of Love groups, one in Fayetteville and one in North Syracuse. One volunteer, Carolyn Vickery, creates a quilt each year out of squares designed by families and presented at the annual candle lighting service.

The goal of all of the work done by the CNY-PIBN is to support families as they go through their healing process.

“From our perspective, the potential of needing grief support starts with pregnancy and the loss of a pregnancy, no matter how far that goes, whether it’s a miscarriage, a stillbirth, a newborn death or an infant death,” Press said. “It’s important for us to be available along the whole continuum, so families don’t feel isolated and more burdened by this. The fact is that connecting people does lighten their burden.”