Candles bearing the names of babies lost during pregnancy or in the days after glow during a remembrance ceremony held at Princeton Medical Center.
Luciano. Julian Angel. Caden James.
Bernadette Flynn-Kelton, BSN, RN, outpatient bereavement coordinator with the Community Wellness Program at Penn Medicine Princeton Health, read off the names, one by one. As she did, parents, many with children by their side, walked quietly to the front of the room to place a candle in memory of a baby—or babies—they lost.
The candles, 15 in all, glowed throughout the remainder of the Dec. 6 ceremony, as the families sang songs, recited prayers, and shared memories.
The UNITE Interfaith Candlelight Remembrance Ceremony, held in the Education Center at Penn Medicine Princeton Medical Center (PMC), is one of the myriad ways Penn Medicine supports families who have experienced a perinatal loss (the loss of a baby during pregnancy or delivery or within the first months after birth).
“We will never forget your babies,” Flynn-Kelton told the parents gathered before her. “We will always be here.”
Parents are not alone
Bernadette Flynn-Kelton, BSN, RN
Perinatal loss is not uncommon in the United States. According to the Maternal Mental Health Leadership Alliance, 30 percent of all pregnancies end in miscarriage and 21,000 babies are stillborn each year. Additionally, more than three of every 1,000 babies born die before 28 days of life and more than five of every 1,000 die before their first birthday.
“Pregnancy loss is something that is happening,” Flynn-Kelton said. “It’s OK to talk about it.”
At Pennsylvania Hospital, families whose pregnancies and newborns have poor prognoses can access the perinatal palliative care program, whether the loss occurs early in a pregnancy or later. The program includes a perinatal palliative care consult, ongoing discussions with family prenatally through delivery, development and implementation of a birth plan at delivery, management of pain and other distressing symptoms for the infant, end-of-life care, and ongoing communication with family after their discharge. Additionally, depending on their wishes, families who experience a loss in the hospital can have photos taken, dress their baby, have footprints and handprints made, and receive a memory box.
Similar services are offered at hospitals throughout Penn Medicine. Chester County Hospital, for instance, partners with a local nonprofit to provide parents with a basket of self-care items, such as a journal and pen, soothing tea, and a remembrance bracelet.
“We want families to have the tools to grieve well, heal, and thrive once again,” said Jennifer Potter, perinatal bereavement and palliative care coordinator and staff chaplain at Penn Medicine Lancaster General Health Women and Babies Hospital. “Each family is offered the opportunity to bond with their baby in a number of different ways before that painful goodbye.”
Reid J. Mergler, MD, an assistant professor of Clinical Psychiatry in the Perelman School of Medicine of the University of Pennsylvania, and an outpatient psychiatrist with the Penn Center for Women’s Behavioral Wellness, explained that everyone has different needs after experiencing a pregnancy or infant loss and that the role of the health care provider is to meet families where they are.
Mergler, who specializes in reproductive psychiatry, noted that parents who experience perinatal loss are at greater risk for depression, anxiety, and complicated grief that can last for years. What’s most important is that parents receive the care they need, including in some instances psychiatric care, and are not isolated from others, she said: “We need to make sure parents know they are not alone in this process.”
The care continues
Danny Pennachi, his daughter Adelina, and wife Gina Hererra Pennacchi, place a candle in memory of their son Luciano while Bernadette Flynn-Kelton, outpatient bereavement coordinator at Penn Medicine Princeton Health, looks on.
For parents who leave the hospital with empty arms, care continues long after they go home.
In most instances, a bereavement coordinator follows up with the family on a regular basis to check on how they are coping and to make sure they are connected to support. At Lancaster General, for example, the bereavement coordinator touches base with the family at six weeks from their loss, and again at three months, six months, and one year. The coordinator also sends a handwritten card at the child’s estimated due date to let the family know she’s thinking of them.
Additionally, each October, Pennsylvania Hospital holds an Infant Remembrance Day to honor the losses of babies that occurred at any stage in the hospital. It’s much like the ceremony held in December at Princeton Health.
Gina Herrera Pennacchi and her husband, Danny Pennacchi, attended the ceremony at PMC to remember their son, Luciano, who they lost in January 2020, five months before he was due.
They are also part of a monthly UNITE perinatal loss support group for any family—whether or not they’re patients of Princeton Health—that has experienced a loss. (UNITE groups are also held at the Hospital of the University of Pennsylvania and Pennsylvania Hospital.)
The couple credits the group with helping them survive the intense pain and grief they experienced after the loss. “We truly do not know what the state of our marriage, family, or relationships would look like if we did not dive immediately into this group for healing and guidance,” Herrera Pennacchi said.
Peer-to-peer support
Gina Herrera Pennacchi talks about her son, Luciano, who died in January 2020, five months before he was due.
“When there’s a loss,” said Flynn-Kelton, who has been involved with the bereavement program at Princeton Health for 18 years, “there’s so much that comes along with it, mentally, physically, emotionally, and spiritually. The support group meetings are a safe place where families can talk about their experiences, share their feelings, and take time to honor their baby.” Peer-to-peer support is helpful to parents who have lost a child at any stage and are trying to heal. “When they see that other families have made it through, they know they can survive it as well,” Flynn-Kelton said.
Mamie Purnell, whose son, Musa, was stillborn at 39 weeks in December 2018, agreed. “I needed to be around people who understood what I was going through,” Purnell said. “I needed to see what life after loss looked like. I saw women laughing and smiling and wanted to be able to do that one day.”
While Purnell initially attended the meetings for support, she now attends to intentionally make space that is just for Musa and to help other mothers the way the group helped her.
Today, she is the mother of two daughters, and her best friend is a mother she met in the support group. “I often tell her she was one of Musa’s gifts to me,” Purnell said.
Sadness and strength
At the Princeton ceremony, as Flynn-Kelton continued to read the names of the children who were lost, parents and family members wiped away quiet tears, united in their shared grief. Toward the end, she invited each family to come to the front of the room to share a few memories of their baby and their experience.
Herrera Pennacchi recited a poem her brother-in-law wrote for Luciano and gave thanks for the group. “Because of Bernadette and others, we were able to grieve properly, and it strengthened us,” Herrera Pennacchi said. “We’re grateful to know this group of people and to have the support and to have space to honor our son.”