Tragedies Provided Inspiration For Angel Fund

By SANDI KAHN

Published on 2/9/2003

New Haven (AP) - What happened to Shelly Cogguillo of Branford shouldn't happen to anyone.

In the last six years, she has lost three babies. The first, Oliver, died when he was 7 weeks old of a heart defect caused by multiple anomalies of his heart that weren't detected during the pregnancy.

The following year, Cogguillo lost Lilla, who was stillborn after 51/2 months of pregnancy. And a year after that, she had an early miscarriage.

Nothing, she says, can prepare you for that kind of loss or for the feelings that come barreling down upon you: anger, sadness, overwhelming grief.

"I was filled with rage after the loss of my son," she says now. She's sitting in Starbucks coffee shop on a recent wintry day, surrounded by files and folders and boxes. She pauses to wipe away an occasional tear as she tells the story of her babies, but mainly she is calm and determined.

"I felt it shouldn't have happened I wanted answers. And then I discovered I was pregnant again."

On the day that would have been Oliver's first birthday, Cogguillo was back in the hospital, hearing more bad news. An ultrasound had just shown that the baby she was carrying had died in utero.

"I couldn't believe it. I was back in that same room with the same thing happening," she says. "Another heart defect. I just closed up. When they delivered the baby the next day, I was very clinical and cold. I didn't shed a tear. I just wanted them to get the baby out, and for me to get on with my life. The nurses asked me if I wanted to see her, and I said no. I wanted everybody to stay away from me and leave me alone."

The nurse who took care of Cogguillo, however, made a memory box of the baby, which was given to Cogguillo as she left the hospital. She remembers looking at the green marbleized cover, thinking that she wanted no part of it.

"I was thinking, 'Are you kidding me, with this box?"' she says. "I took it home, put it away on the farthest shelf on the bookcase. Didn't want any part of it."

But two days later, Cogguillo was in the grip of grief and anxiety. "I thought, how could I not have connected with that baby? She was my daughter," she says. "And I took the box down. There was a little Polaroid picture of her, her little pink hat, and the blanket they wrapped her in. There were our hospital bracelets, and the tape measure they'd used, and a little booklet that told information about her.

"The nurse had even gone to the trouble to include her footprints on a folded-up index card." Cogguillo stops for a moment, remembering. Then she says, "That was the connection with her that I needed. I'm not a mushy or sentimental person, but I carried her hat around for days, holding it and smelling it."

Besides the tiny relics of a baby who had never lived, there was something else important in that box, Cogguillo says. But there was a book: "Empty Cradle, Broken Heart: Surviving the Death of Your Baby," Fulcrum Press, $15.95, by Deborah L. Davis. When Cogguillo started reading the book, she says she discovered that she wasn't alone and also that this experience wasn't something she'd just be able to push away.

"I made up my mind that I wanted to help, that I wanted to make sure that every parent going through this would get a memory box and a book," she says. "At the time of Lilla's stillbirth, everybody who lost a baby got some sort of box but it wasn't formalized what went into it. And the nurses had to pay for it and put it together themselves. Some people got books, some people didn't. I wanted it to be a formalized thing, for everyone."

Soon after, Cogguillo reconnected with Mary Rabuffo of North Branford, a childhood friend, who had just lost her 51/2-month-old daughter to leukemia.

"That did it," she says. "I decided I had to do something, and the idea for the Angel Fund was born."

Cogguillo wrote to Brenda Beard, a labor and delivery nurse at Yale-New Haven, who is also a coordinator of the Perinatal Bereavement Program, and asked her how she could help make sure that everyone who needed a memory box could get one.

Two years later, Cogguillo's dream has more than come true. Through relentless fund-raising and sponsoring two golf tournaments as well as the help of friends and community movers and shakers, she has raised more than $62,000 and created a permanent endowment for Yale-New Haven Hospital's Angel Fund. And now she's moved beyond that, incorporating the Angel Fund so that it can provide memory boxes for other hospitals throughout the state.

Dr. Steve Fleischman, an obstetrician and gynecologist and chairman of the board of the Angel Fund, says this is a cause that many doctors feel strongly about.

"In OB, we deal with happy things most of the time. We know our patients better than most doctors do; in the course of their pregnancies, we see them about 14 or 15 times, and we deal with a lot of psychological issues. When there's a stillbirth, I cry, too. We want to do anything we can to help them. It's devastating."

Elaine Villano of Wallingford, who lost her son Alexander three days after his birth in May, 2001, says she made her own memory box after her son died, and takes it down on special anniversaries and occasions to look at it.

"At first you think, why do I want these relics of a baby I can't have? But it's later so valuable to you. I wouldn't trade one of our little personal items. They bring him back to me, even if just for a moment."

Fleischman says he's hoping someday to conduct a long-range study, perhaps with the Department of Psychiatry or bereavement services, to determine just what types of things help parents who've suffered such a loss.

"Years ago, if you lost a baby, the feeling was that you should just try to sweep it away and forget about it," Beard says. "People went through this silently. We hear from older women who talk about their child losses and how heavily they weigh about them still.

"Our goal," she says, "is to make sure this baby who didn't make it is placed within the family. It is a life worth crying about."

Because of the Angel Fund, the hospital now has a digital camera to take beautiful pictures of the babies, not simply a Polaroid shot. And now the memory boxes include a soft mold of the baby's footprint, and a little gown, as well as information about local and national support groups and Web sites.

"We're learning what helps people," she says. "When we lose a grandparent, there are societal norms that tell us what to do. But when people experience a stillbirth or the death of an infant when they've been anticipating a joyous event, they have no one in their family who can teach them what to do. Our job is to guide them, to let them know that anything they feel is normal."

There's good news, too. Elaine Villano now has a 5-week-old daughter, Allison, who is healthy. Mary Rabuffo and Cogguillo, both already the mothers of 9-year-olds, have subsequently gone through successful pregnancies together, and gave birth to sons within three weeks of each other. The boys are now 2 years old.

"My babies are with me all the time," Cogguillo says of the three who didn't make it. "I don't want to forget them. But I've found a place to be positive and upbeat."