Share This“Some stories help change the way we handle ourselves or approach difficult situations in the future. Some stories are happy, some are sad, and some simply rock us to our core. Our story has done all of that,” explains Susan Bevevino as we begin talking about the origins of what is now the Olivia’s Angels Perinatal Palliative Care Program at Allegheny Health Network (AHN).
Susan and Dan Bevevino have had four beautiful children. After having their son Frank, Susan became pregnant in 1999 with a baby girl, Olivia.
“When I found out I was having a girl, I really started to imagine what she would look like and what her temperament would be — if it would be similar to mine,” Susan says. “I could feel her kicking around constantly.”
Then, 37 weeks into her pregnancy, Susan couldn’t feel Olivia kicking anymore. Taken to Allegheny General Hospital (AGH), they were monitored closely. On Saturday, October 2 at 2:09 p.m., Olivia Anne Bevevino was born via emergency cesarean section.
“When I saw her for the first time, there were monitors, lines, tubes everywhere,” Susan says. “She was on a ventilator and a nurse was beside her pushing blood into her umbilical IV line — but all I saw was the most beautiful baby girl in the entire world.”
Susan Bevevino holding daughter Olivia.
Quickly following her birth and helped by the labor and delivery nurses at AGH, Olivia was baptized, dressed, photographed and given her own private space. Susan and Dan held her in their arms until she quietly slipped away at 5:58 p.m.
“We had a small funeral for Olivia, but support systems were extremely lacking, and we were struggling emotionally,” Susan says. “I went to miscarriage support groups, which were helpful, but I just didn’t fit in.”
Adding that some friends and family members also became distant out of fear of saying the wrong thing, she and Dan realized that there was an undeniable gap in care and recognition for families experiencing neonatal loss.
“A loss of this magnitude can feel impossible to navigate, but I knew I had to take our grief, personalize it, and make it tangible. We needed to move through it to get to the other side,” she explains. “And I just wished there was someone who said to me after Olivia’s passing, ‘here is where you go to do this, and this is where you can find that.’ It seems so straightforward, but it just wasn’t there at the time.”
The kindness and compassion Susan and Dan received from the AGH NICU nurses inspired a unique act of generosity. For 15 years, beginning on Olivia’s first birthday, the Bevevinos marked each birthday by donating cameras and photo equipment to the AHN NICU, so that parents facing a loss like theirs could document and have a comforting reminder of their family’s time together.
“Dan and I both felt that the nurses at AGH did everything they could during a difficult situation, and we wanted to give back,” explains Susan.
As the years passed, they saw that even more could be done to help others — and then they met Marta C. Kolthoff, MD.
“When the hospital introduced us to Marta, we finally felt that we found what we were looking for as we had spent a number of years searching for other ways to give back, to help others. Marta presented her program idea, and Dan and I both knew where we wanted to put our efforts into making this happen. It was like a weight had been forever lifted,” Susan explains.
Dr. Kolthoff, a perinatologist and reproductive geneticist, had a special interest in perinatal loss and the intense grief that can come with it. Working with Susan and Dan as key funders, she conceptualized a perinatal palliative care program, run exclusively by a clinical team, that would provide support, resources and care for families experiencing the loss of a newborn or dealing with a life-limiting diagnosis.
Centered at AHN’s flagship facility for maternity care, West Penn Hospital, the program became one of the first of its kind in the country. It was officially established in 2017, and with seed funding from Susan and Dan, was formally named Olivia’s Angels Perinatal Palliative Care Program one year later.
Susan and Dan Bevevino at a recent AHN Gala, an annual fundraising event.
Olivia’s Angels Perinatal Palliative Care at AHN remains one of the most robust programs for newborn and infant loss maintained by a health system in the country.
Since its inception in 2017, it has changed how clinicians treat, view and discuss unimaginable loss, subsequently sparking a societal shift across the communities it serves.
The program’s holistic approach brings together a variety of specialists to deliver the best possible care, including maternal-fetal medicine, genetic specialists, neonatal clinicians, nurses, and bereavement services.
In addition to clinical care, the team helps to coordinate services, creates keepsakes and connects families directly with grief counselors.
Uniquely, AHN caregivers in the program remain a part of the family’s extended care plan and host bi-annual events to bring families together and find solace in this community.
The program has extended to all AHN hospitals throughout western Pennsylvania offering labor and delivery services. In 2022, Olivia’s Angels also announced the opening of a dedicated, private Butterfly Suite at AHN West Penn for families dealing with perinatal loss, a first-of-its-kind for patients in the region.
The opening of the suite was made possible through the generosity of the West Penn Hospital Foundation and a local family, Becky and Jeff Keenan. The Keenans envisioned the Butterfly Suite in honor of their second son, Caleb, who was born still on Memorial Day weekend in 2020.
“This suite is located on a private corner of the labor and delivery floor at AHN West Penn, notably separate from obstetric patients in labor. It’s completely soundproof, decorated with thoughtful art and features ample seating for the entire family,” explains Dr. Kolthoff. “Spaces like this are absolutely critical to the grieving process — it can be retraumatizing to be next to families celebrating the birth of their healthy babies or have a care team that’s unaware of the sensitivities of the situation.”
Olivia’s Angels also launched a virtual support group in late 2022 for people to come together and share experiences with perinatal loss and miscarriage. The group meets monthly. Those interested can visit ahn.org/events to register; participants do not have to be AHN patients to attend.
In addition to patient support, a cornerstone of the Olivia’s Angels program is an expansive, thoughtful strategy to train clinical and support staff — ranging from physicians to nurses to custodians — on how to approach and care for families in such devastating circumstances.
“I truly believe it starts on the front lines, in the hospital setting, when it comes to changing how we think about, treat and discuss infant loss,” Susan says. “Marta and I are dedicated to reaching as many people as we can throughout Allegheny Health Network with tools to help them talk to patients about this loss and best support them through the worst days of their lives. I can still remember the nurse that took care of Olivia — I can still see her face.”
Dr. Kolthoff and the clinical leadership team behind Olivia’s Angels work to visit and train each labor and delivery site throughout AHN on how to best approach perinatal loss, work with parents to memorialize their child and provide the necessary resources and support system after they leave the hospital.
“I want the biggest takeaways in these trainings to be recognition, validation and acknowledgement. I want to make sure no one walks away from these parents without acknowledging the loss, even in a small way,” Susan continues.
Taking this one step further, Dr. Kolthoff and Susan are also reaching the next generation of caregivers by bringing their training to the AHN Citizens General and AHN West Penn Schools of Nursing.
Setting the standard for similar programs across the country, Olivia’s Angels has delivered a tailored curriculum to more than 150 caregivers in its first five years.
“It’s truly an honor to be a part of something like this, but I’m not really looking at it as my legacy or Olivia’s legacy — there’s much more work to be done,” Susan says. “At the end of the day, I ultimately don’t want anyone to have to navigate this type of situation alone, like I did, and I will do whatever I can and dedicate what resources I have to make sure of that.”
The need is greater than some people may realize. In the U.S., it’s estimated that roughly 24,000 babies are stillborn (at 20 weeks of pregnancy or later) each year, and neonatal death — death soon after birth — happens in about four of every 1,000 babies. Some research suggests that miscarriage — defined as pregnancy loss before 20 weeks gestation — takes place in more than 30% of pregnancies.
“What we’re talking about is common, yet there’s no culture around the loss,” Susan points out. “We take such painstaking effort to pay tribute and memorialize deaths when our loved ones pass away — our fathers, mothers, aunts, uncles, brothers and sisters — why are we not doing the same for neonatal loss?”
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