A new suite at Cleveland Clinic Akron General provides a quiet place for a family that has experienced loss during pregnancy to say their goodbyes. 

Megan and Anthony Gargano of Richfield worked with hospital officials to create the Butterfly Suite. 

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They wanted a home-like environment for grieving parents and families. 

The Garganos first child, Luna Serafine Gargano, died by stillbirth two days before her due date at 37 weeks in June 2019. Doctors discovered she did not have a heartbeat and Megan was taken to the hospital, where she delivered Luna. 

“It's the hardest thing to go through as a parent to lose a child,” said Megan. “But the hospital did such an incredible job supporting us through the process that once we left and the weeks went by, we tried to think of ways to honor our daughter Luna.” 

The couple wanted to create a space with a living room, bedroom and bathroom to provide families a comfortable space for bonding time, she said. 

The couple worked with the hospital and other organizations such as North Canton-based Ashlie’s Embrace, which provides hospitals with a CuddleCot, a cool gel pad that uses distilled water to keep a baby’s body temperature between 32 degrees and 42 degrees for up to 96 hours to give grieving parents the time they need to say goodbye. 

The Butterfly Suite is away from the hustle and bustle of the labor and delivery wing, but is still at the end of a postpartum hallway so the mother can still be cared for by nurses, said Dr. Jennifer Savitski, chair of the obstetrics and gynecology department at Akron General. 

Pregnancy loss affects about 3% of pregnancies prior to 20 weeks and between one in 150 to one in 170 of pregnancies beyond 20 weeks, Savitski said.

"This is a significant issue," she said. 

Though the hospital has great teams of medical professionals who help bereaved parents, “one of the things that we lacked, which the Garganos saw, is really facility,” said Savitski. 

“Unfortunately, when these patients come in, the facility that we have is for patients who are expecting a joyous live birth and so they’re on labor and delivery and typically we try to shield them as much as possible from the hustle and bustle but sometimes you can’t help but hear babies crying in the next room,” she said. 

The room, which opened in May, is available to any patient who has experienced the loss of a pregnancy in the hospital, not just stillborn loss, said Anthony Gargano. 

“It’s a room for infant loss and pregnancy loss. All those losses matter just as much, so we want to make sure this space can be adaptable to whatever the situation was,” he said. 

The Garganos raised $32,000 to outfit the suite, including with a hospital-grade bed for mom and a partner to spend time with the baby. A CuddleCot has been placed in a crib/bassinet and the living area has a sofa with a full-sized pull-out bed for other family members. Plaques around the room also provide families with encouraging words and an area near a rocking chair is stocked with children’s books, music and snacks for the family. 

Families also receive a copy of a book that Anthony Gargano was inspired to write after his daughter’s death. "Penny Goes to the Moon" is a story about the Gargano’s family dog visiting Luna after her passing. The book can be purchased on Amazon and proceeds will go to providing more aid to grieving families.  

It was Anthony’s first book, with help from Megan and illustrated by Matthew Franklin of Columbus. Anthony said he noticed as he was grieving the loss of Luna that there weren’t many books for families and young siblings to grieve the loss. The Garganos now have a nearly 2-year-old son, Arlo, and talk with him regularly about his big sister, Luna. 

Many little details have also been covered by the Garganos, including providing clothes for families to dress their child in the room. For really small babies who may not fit in infant clothing, hand-sewn cloth wraps have been donated. In the bathroom, there are toiletries for the family and an infant bath to bathe the baby. 

Hospital staff can also connect grieving families to volunteer photographers to take pictures of the family and baby and provide a keepsake book. The Butterfly Suite also received donations from another group that supports stillborn loss, Aaliyah in Action. 

The Garganos continue to fundraise through their website, www.thebutterflysuite.org through Cleveland Clinic’s foundation to provide donations to the Akron General suite. They also have hopes to partner with other hospitals to provide a similar suite for parents. 

“This should be a line item for every hospital,” said Megan Gargano. “Our goal is to build that awareness and our first charge is to go throughout Northeast Ohio and Ohio and making sure every labor and delivery area has a space like this.” 

Cleveland Clinic is financially supporting the suite by providing the clinical space that is not used unless a family has experienced a loss, though patients will still be billed through insurance for its use like a hospital stay, Savitski said. There are no “enhanced charges” to a family to use the Butterfly Suite, said Savitski, and mothers get medical care if needed, but “they’re not inundated with medical personnel.” 

There is no limit to how long a family can use the suite, Savitski said. Some families who have experienced loss want to leave as soon as possible and grieve at home as soon as it is medically appropriate and other families want to stay with the baby as long as possible.

“Luckily, since this space has been open, we haven’t had a situation where we had the demand to where we’re having to make decisions about somebody staying or going. Most people are ready to go when it's medically time for them to go home,” said Savitski. “We have had people utilize this space and if nothing else, just to have a dedicated space for family to be in.” 

Gargano said after their loss of Luna, “we didn’t want to go home because we obviously didn’t want to leave Luna, but it was a very hard experience” to be in a regular hospital room near other newborns. 

The couple was able to use the CuddleCot, which was Ashlie Embrace’s first Cuddle Cot placed in a hospital, said Anthony Gargano. 

The Butterfly Suite allows families permission to grieve and bond and begin the healing process, said Savitski. For parents without access to a CuddleCot, which helps give the family more time with the baby, the parents may only have a few hours with a baby and then the mom and family are left with nothing. 

“Whereas in this experience, they start to create those memories and it’s only a few more hours or a day, but it lets them bathe the baby, let them dress the baby and take pictures to be able to see, yes, this baby was born rather than just the loss,” Savitski said. 

The Garganos said they want to help get rid of the stigmas associated with loss to offer support. 

“We've donated the room, not just to Luna, but to all the babies that are gone too soon. We’ve met so many people through this experience and we’re just really thankful to be able to provide this resource," said Megan.  

“We say we hope it’s the least \-used room in the hospital, but we’re thankful that it’s here to help support families during this really difficult time.” 

Beacon Journal consumer columnist and medical reporter Betty Lin-Fisher can be reached at 330-996-3724 or blinfisher@thebeaconjournal.com. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ and see all her stories at www.tinyurl.com/bettylinfisher