This is a printer-friendly version of an article from Zip06.com.Article Published November 4, 2020
For more than two decades, Hope After Loss has been working to help “those who experience pregnancy and or infant loss to find the inspiration of hope by providing connections, comfort, and care,” according to www.hopeafterloss.org. The organization was founded when Dr. Michael Berman, an obstetrician at Yale had several families experience a loss and he connected them with each other for support.
Prior to COVID, groups were held in locations throughout Connecticut, but have since gone virtual.
Peggy Rosamilia of North Haven is one of Hope After Loss’s facilitators. Though she misses seeing the members of the group in person and being able to comfort them with a hug, she is happy to be able to continue to offer the group meetings and reach even more people in need of support.
“Since we’ve been on Zoom, we’ve gotten people from all over the country joining who have heard about us,” said Rosmilia. “We get good feedback that it helps them to hear other people’s stories that they’re not alone.”
Hope After Loss was originally called the Hygeia Foundation for Perinatal Loss and Bereavement and began by offering support groups to those who had experienced the loss of a pregnancy or an infant. The support groups, which are all free, are peer led by those who have experienced loss. Groups are currently running virtually on Wednesdays at 8 p.m. as well as a group that is held online every other Thursday for those trying to conceive and are pregnant after experiencing a loss.
Rosamilia lost her son, Danny, 24 years ago and recalls feeling very lonely as there were no support groups and it wasn’t something that was freely discussed. When she heard about Hope After Loss, its cause immediately resonated with her and after many years, she found the support she had been seeking.
“After joining several years ago, I realized there’s a lot of people who know what I went through,” said Rosamilia. “I used to be afraid to talk about Danny, but the group helped me open up. People would ask how many children I had and I struggled to answer, but now I say, ‘I have two living daughters and a son I had to bury.’ It’s given me freedom to be able to talk about him. The group has helped me.”
At the support group meetings, people can not only talk about their loss and their feelings, but about their experience and the challenges they face such as seeing pregnant family members and friend or attending baby showers. Rosamilia noted that one of the challenges she faced after her loss was her experience with those who were supposed to be helping her.
“I wish more doctors were aware of how to deal with people going through it because when I went through my loss, some doctors were really cold—it was awful,” said Rosamilia. “In the hospital, I asked for a priest to bless my baby and I don’t know what priest thought, but he didn’t look at me or husband, did quick prayer, and practically ran out of room. Many people don’t know or understand how to talk to someone who has experienced a loss.”
As that was the experience of many in the early support groups, Hope After Loss expanded its mission to include outreach and education and in-service trainings at hospitals, OB-GYN practices, and local events. Hope After Loss works with doctors and clinicians by sharing personal experiences and resources for patients.
“We want to create awareness so when they’re confronted with someone who experienced a loss, they can get them in touch with us,” said Christina Mailhos, the executive director of Hope After Loss. “It used to be that pregnancy and infant loss was something you didn’t talk about and because of that, even physicians and caregivers didn’t know right thing to say and do. As parents who have been though it, we try to talk person to person. We can tell you what we’ve heard has hurt and what’s been helpful.”
Having doctors and caregivers understand is so important to Hope After Loss that it founded the Compassionate Care Award 10 years ago. Those who have experienced loss can nominate a caregiver who provided exceptional care during their loss and the board of Hope After Loss selects the recipients.
“It’s a celebratory event to really highlight what great caregiving can look like,” said Mailhos. “The goal is to help everyone understand how important compassionate care is.”
‘Shouldn’t Be a Quiet Thing’
In addition to formal outreach to clinicians, many who are involved in Hope After Loss help spread the word. Rosamilia has also taken to wearing pink and blue ribbons and when people ask her what they stand for, she shares information about Hope After Loss and its mission.
“It never fails that the person or a sibling or friend had a loss and it gets people starting to talk,” said Rosamilia. “Every time I have a doctor appointment, I’m talking to them about it because a lot of people don’t know about us and it’s important how you deal with people who are grieving this loss. You just want people to listen to how you’re feeling. It shouldn’t be a quiet thing anymore. We need to talk about because sadly it happens to more people than we realize.”
It addition to the emotional challenges those who experience loss face, there are often other hardships. Hope After Loss offers financial assistance for burial and cremation to those in need. The organization helps about 50 families a year who are referred by social workers and other networks.
“A big part of the grieving process is to be able to say goodbye properly,” said Mailhos. “We have some really great sponsors who have provided financial support to us and sponsors who support different events.”
Hope After Loss also has several fundraisers throughout the year with its biggest being the annual Footprints on Our Hearts Walk & 5K. Those participating collect pledges through their personal fundraising pages.
Due to COVID, this year’s walk was held in a virtual format. In past years, the walk is held locally in honor of those lost. In addition to the walk, Rosamilia runs a booth with remembrance crafts. There is also a remembrance ceremony.
“When you go to something like this and see 500 other people all there for the same reason, it in and of itself is healing,” said Mailhos. “People come back year after year and bring their families and friends. This year we tried to keep the program as close to what it normally is and give people a way to interact and share with each other on social media.”
One of the most emotional parts of the walk is when the names of the babies who passed away are read. With this year’s presentation having to be virtual, the board asked those who had suffered a loss to send in a video of them saying their baby’s name.
“It’s touching to see people saying their baby’s names—it’s really a beautiful thing,” said Mailhos. “After making that video for the walk, we realized we could expand it for National Pregnancy and Infant Loss Day to share.”
The video was shared to the Hope After Loss Facebook page. The page is also active with informational resources and other ways for people in need of support to connect. Rosamilia can still remember the first time she was a part of the walk.
“I had no idea what it would be like,” said Rosamilia. “There’s a time when they read out the baby’s names and I just couldn’t believe I was hearing my baby’s name out loud. It’s healing. In one of my groups a few years ago, a girl shared that they mispronounced baby’s name and for her, it was a good thing because she went up and corrected them. It was reaffirming that she did have a baby and he had a name.”
For information, visit www.hopeafterloss.org.