Sweet Grace: How grieving parents now provide support to others

In March 2003, Josh and Katy Dortenzo got news no expectant parent wants to hear: their unborn daughter suffered from a condition called hydrops, which occurs when large amounts of fluid build up in a baby’s tissues and organs causing extreme swelling. The diagnosis is almost always fatal.

“We knew she would not survive,” Katy Dortenzo recalls.

Cicely Grace, the young couple’s first child, was stillborn at 29 weeks, and life as they knew it changed. “We grew up really fast,” Dortenzo says.

As the Chambersburg parents searched for resources to help them deal with their grief, they discovered a void. Back then, there wasn’t a social media group they could turn to for support.

They began to reach out to other families with small items of support and before they knew it, Sweet Grace Ministries was born.

“The goal was to help other families in Chambersburg who were going through what we went through. There isn’t a lot available to parents,” Dortenzo says. “We wanted to provide things that we missed out on.”

The couple began by offering support, hope and empathy in the form of baskets filled with resources, and memory items to provide comfort to grieving families.

Soon, word got around. “When it started to grow and people started to make donations, we knew we had to make it a nonprofit,” Dortenzo recalls.

Today, Sweet Grace Ministries reaches Pennsylvania families from Chambersburg to Hazleton to State College and beyond, providing gift baskets and comfort bags to families enduring infant loss at hospitals throughout Central Pennsylvania, including Hanover, Hershey, Lebanon, Carlisle and York.

“We are in 11 Pennsylvania hospitals, but this is our hub,” explains Dortenzo as she gestures from her desk at the Sweet Grace office on Horst Avenue in Chambersburg.

Last year, 300 baskets and 500 bags were given out and they are making an impact.

“The loss of an infant is extremely difficult for any family. We know that support during that time is critical, and the support shown to families within our units by Sweet Grace Ministries has immeasurable impact,” says Teresa Chaires, director of patient services, family birthing services, WellSpan-Summit Health. “We are so appreciative to have a community partner in Sweet Grace Ministries, to help us care for the emotional needs of our patients who suffer an incomprehensible loss.”

In addition to the gift bags and baskets, Sweet Grace also provides photography services to families, as well as burial gowns and ongoing support through groups.

The main thing that was lacking, Dortenzo says, was knowing they weren’t alone.

“Our service is important, but even more important is connecting people who understand fully the path you are walking,” Dortenzo says. “Sometimes you just need people who are walking the same journey you are.”

“Sweet Grace Ministries offers a lifelong support system for our families who bond with others suffering through this difficult journey,” says Taryn Heiland, assistant nurse manager of Labor & Delivery at WellSpan York Hospital. “Many of our families at WellSpan York Hospital have shared stories of the positive impact Sweet Grace Ministries has had on them and have made generous donations through the organization in the memory of their lost child.”

Support groups meet monthly in Chambersburg, Harrisburg and York. For times and locations, visit sweetgraceministries.com. Parents who have lost infants at any stage of life are welcome to participate.

“You can be a year, a day or 40 years out, whenever you need to express hurt, you can come,” says Cassidy Butler, a Chambersburg mother who regularly attends. “When you have a child who passed away, who do you talk to?”

Butler delivered her daughter, Alivia Grace, at Waynesboro Hospital, but complications sent the baby to York Hospital where she passed away six days later.

“You see other mothers with their babies, but you leave the hospital with nothing,” Butler says. “When your baby dies, there’s not a lot of tangible things you can do.”

Butler was a recipient of one of the comfort baskets that included a bear that nurses had put in Alivia’s bassinet. “For two years, I slept with that bear every night,” she recalls.

Alivia would’ve turned 3 in March and now, Butler volunteers with Sweet Grace.

Sweet Grace Ministries operates entirely on donations. No grieving family pays for baskets or support. A donation of $150 provides a basket to a family who has had to say goodbye to their child in the hospital. Each basket given out has a tag remembering an infant who was lost. “It creates a root connection for the family that receives it,” Dortenzo explains.

Dortenzo says the entire Pennsylvania community is welcome to support grieving parents, either by making a donation or helping to put baskets together, as well as knitting or crocheting blankets or sewing burial gowns. For more information, call Sweet Grace Ministries at 717-414-7772.

“We love when the community gets involved, even those who have no connection to infant loss,” Dortenzo says.

Andrea Rose, a former editor of Central Penn Parent, is the assistant editor of the Waynesboro Record Herald.