Kathy Kuhn will always remember the day her daughter Mary Alice was born: April 28, 1980. Her baby died the same day.
“She was born seven weeks early. A sonogram showed that she had fluid in her abdomen. She died during labor. She was a beautiful baby, weighing more than 9 pounds,” recalls Kuhn, who delivered Mary Alice, her third child, at Hershey Medical Center.
Despite the sorrow of losing her precious baby daughter, Kuhn was grateful she and her husband were able to hold their newborn. The nurses were wonderful, Kuhn says, respecting their need to see and be with their baby. It helped them begin the painful grieving process.
“It wasn’t until I came home from the hospital that I realized how rare my experience was. At that time, the parents’ feelings were often dismissed when they lost their baby,” Kuhn says. “The truth is that it is a loss for the whole family.”
From her experiences, and those of other parents who suffered the loss of a baby, came Share of Lancaster, a support group for parents and families dealing with the death of an infant through miscarriage, pregnancy complications, prematurity, stillbirth, SIDS or other causes.
This year, Share of Lancaster marks its 40th year serving families in the community. Kuhn co-founded the nonprofit with nurse Donna Shubrooks, who no longer lives in the area, and nurse Susan Burkhardt, who died five years ago. All understood the loss of a baby through their personal experiences.
To mark the group’s anniversary, a Founders Gala will be held at 6 p.m. March 25 at Eden Resort & Suites in Manheim Township. The gala will feature food, drinks, a silent auction and the entertaining dueling pianos of Howl at the Moon.
“(The gala) will help with some of the expenses of Share,” Kuhn says. Share’s programming includes education at hospitals, support groups, burial for babies and special angel gowns made for the babies to wear.
Changing the conversation
Dr. Serena Wu, maternal fetal medicine physician with Penn Medicine Lancaster General Health, says the way loss of a baby is handled in hospitals and by medical professionals has changed dramatically since Share of Lancaster began its mission. She credits Share (originally an acronym meaning a Source of Help in Airing and Resolving Experiences) with helping to institute those changes.
Wu handles high-risk pregnancies, such as abruptio placentae, advanced maternal age, cervical insufficiency, fetal anomalies and life-limiting diagnoses. Because of the high risk of these conditions, loss is inherent in her work, and it is always painful.
Wu now carries on the work of Kuhn, Burkhardt and Shubrooks. Because Wu deals with high-risk pregnancies, she knows how precarious life can be. About 1 in 4 pregnancies end in miscarriage, stillbirth or loss of the baby, Wu says.
“It is more common than most people might think. Once people open up, you’ll find that so many people have experienced loss. They just don’t talk about it,” Wu says. “But things are changing.”
She and her husband, Rob Ross, have experienced this grief themselves, suffering a late-term loss with their third child. Like many mothers who have experienced such a loss, Wu says she is the mother of four children, three of them living.
“When a mother loses her baby, I reassure her that she is still a mother. That baby grew within her. Her baby’s life deserves to be honored,” Wu says.
Kuhn agrees. She had two children at home when Mary Alice was born. Several years later, she had a fourth child.
“I have four children, with one in heaven,” Kuhn says.
For family and friends, it is difficult to know how to respond. Sometimes in an effort to be comforting, they might say the wrong thing, such as assuring them that they can have other children or reminding them that they never really knew the baby. There is a tendency to downplay the experience, often because the loss of a baby is so heartbreaking at its core.
“I held my baby in my arms. She was my baby. I will never forget her, and I see Share as being my tribute to Mary Alice,” Kuhn says.
Retired hospital NICU nurse Mary Ann Wolpert has been an active member of the Share board of directors for 25 years. She was a founding team member of the annual Share Walk to Remember.
Wolpert has been involved in changing the way health care approaches perinatal loss. Share began, she says, when a grieving mother had the courage to speak to other parents, nurses and doctors.
“She asked for change in how the medical profession handled the care of families after their baby died. She and other bereaved parents who gathered with her educated the community of Lancaster about what bereaved parents needed most. Her grief became energy and passion,” Wolpert says, referring to Kuhn.
Forty years after Share’s founding, it continues to educate the community on how to promote healing. Newly sensitized nurses and professionals have labored intensively to change hospital protocols and departmental policies so that bereaved parents receive appropriate care, Wolpert says.
“A child conceived is a member of a family forever,” she says.
Wu and Ross have dedicated themselves to carrying on the mission started by Share so many years ago. Ross volunteers with Share, taking calls from the 24-hour answering service and comforting bereaved parents. He has served on the board of directors and volunteers for the annual Walk to Remember. As a professional videographer, he records some of the burial services. His video presentation will be showcased at the Share Gala on March 25.
The burial services are held several times a year, most recently on March 8, when 40 babies were buried at a special area of St. Joseph’s Cemetery in Lancaster. The two plots of cemetery space were provided by the Roman Catholic Diocese of Harrisburg at St. Joseph’s many years ago. Since February 1984, thousands of babies have been buried there,with full services involving family and friends.
The mission is close to the heart of Charles F. “Chip” Snyder Jr., owner and licensed funeral director for Charles F. Snyder Funeral Homes. He personally began handling the funerals of the babies back in 1984. When an infant has died, whether a miscarriage, stillbirth, shortly after birth or in the first few months of life, he transports the babies and provides their families with funeral services that honor their young lives. Evan Eagle Burial Vaults donates the tiny caskets.
“We do not ever charge a family when they lose a baby. It’s something that we have always agreed on,” Snyder says.
He and his wife are among those who have dealt with the loss of a baby before birth, and for that reason, Snyder has special compassion for families. He has volunteered with Share for 40 years and has seen the changes in health care and funeral services within families and the community.
“I’ve learned through all these years that no matter how far along the pregnancy is, the family experiences the loss of their hopes and dreams for that baby. Their lives are shattered, and I try to do what I can to help them get through it,” Snyder says.
For Elizabeth Noonan and her husband, the loss of their unborn triplets six years ago at 19 weeks was heartbreaking. Share gave them comfort during one of the most difficult and unexpected times in their lives.
“Before we left the hospital, Share provided us with beautiful keepsake boxes filled with remembrance items. Though it was completely unexpected, it was greatly appreciated,” Noonan says. “At the graveside service, it helped give us some peace knowing that our precious little angels were not alone when saying our final goodbyes. They were among other angel babies.”
Noonan is grateful for Share in honoring their loss with a Walk to Remember. It helps them realize that they are not alone, and that there are many others who have been in similar situations.
“Our three angels made an everlasting impression in the short time we had with them and will always have a piece of our hearts. Time has passed, and we have been blessed with our two amazing and beautiful rainbow babies. They are being watched over by their siblings in heaven,” Noonan says.