Sunday, September 09, 2007

Dealing openly with a taboo

Each one is different but they all end the same: the warm dreams of the future wind up shattered on the cold floor of harsh reality.

It happened that way for Liz and Jack Norton of Arnold in August 1999, the eighth month of Liz's first pregnancy. They learned their son Chandler John (C.J.) was stillborn.

The next day, Aug. 27, C.J. was delivered at Anne Arundel Medical Center and gently given to his grieving parents to bathe and dress for the first and final time. They took Polaroid photos of their beautiful son and preserved his footprints for his memory box. C.J. was baptized, surrounded by family members of several generations.

In Maryland, in 2000, there were 658 stillborn deaths recorded. There are over 5,000 deliveries a year at Anne Arundel Medical Center, one of the largest birthing centers in Maryland. There are also about 50 stillbirths each year at the hospital - about one a week - and many more miscarriages.

Until recently, fetal deaths were swept away, not spoken of. Taboo. Parents suffered in silence.

Since the late 1990s, AAMC has had a Perinatal and Infant Loss Program coordinated by obstetrical nurse Annie O'Sullivan.

"No one knows what to do when a baby dies," said Liz Norton, a director of contracts for USi. Jack Norton is a pharmaceutical salesman for Abbott Industries.

"Annie was wonderful. She said 'What do you need?' and did it. She trains the staff, all the doctors and nurses, the radiologist, the cafeteria staff, a lot of people aren't sensitized to it," Mrs. Norton said.

"The Women's Auxiliary makes beautiful hand-smocked dresses for these infants. The families are given beautiful wooden memory boxes to hold mementoes of the baby."

In recent years at AAMC, a butterfly emblem is placed on the hospital room door where such a loss has occurred, so the staff knows to approach the people with greater sensitivity. Each October, a group of men, women and children hold a service of remembrance called "Forever in our Hearts," in Quiet Waters Park.

Mrs. Norton said Ms. Sullivan moderates a monthly support group meeting for those who have experienced miscarriage, infant loss or stillbirth in their families. It is not "women only." Men are welcome.

The group meets from 7 to 8:30 p.m. the first Monday of most months, at St. Andrew's United Methodist Church in Edgewater, 4 Wallace Manor Road. This month, because of the holiday, the meeting date is Sept. 10. For more information, contact Ms. Sullivan at 443-481-6114.

Though the Nortons gave birth to two healthy daughters - Kelsey, 7, and Regan, 3 - they have neither forgotten their son nor the tender, sensitive care they received at AAMC.

From 7 to 10 p.m., Saturday, the Nortons are hosting the eighth annual Perinatal Loss Fundraiser. It will be held, rain or shine, overlooking the waterfront at 944 Burnett Drive in Arnold. The evening features hors d'oeuvres, music and door prizes. It is an adult evening, no children.

Ticket are $60 per person, $100 per couple, with 100 percent of the proceeds going to the AAMC Perinatal Loss Program. For more information, call 443-481-4747.

"Over the years, we've raised $80,000 for the program. We've bought disposable and digital cameras because a camera is something people don't think to pack in a situation like this," Mrs. Norton said.

The funds pay for part of Annie Sullivan's salary and for other expenses of the program. The same day, from 1 to 3 p.m., Creating Communities is presenting The Secret Club, a traveling exhibit of artwork by women (and men) who have suffered perinatal loss. Laura Seftel, founder of The Secret Club, is a licensed mental health counselor and certified art therapist. Having had a miscarriage herself, she will be giving a talk about perinatal loss and The Secret Club Project.

"The artists were also asked to submit statements which are important elements of the project, as women break the silence about their artwork and the deeply personal experiences it reflects," Ms. Seftel said.

"Many of them wrote about the mixture of guilt, grief and rage they experienced following their unexpected loss. They reveal a common theme of feeling misunderstood at times by family, friends and health care providers and a lack of relevant rituals to mark this life-altering event."

The award-winning exhibit, which began in Northampton, Mass., features 45 participating artists. It has already traveled to Olympia, Wash.; Chicago, Ill; Denver, Colo.; Arlington, Va.; and New York City. More entries are welcome.

The reception, exhibit and talk are free and open to the public. It will be held at the Unitarian Universalist Church of Annapolis, at 333 Dubois Road, near Bestgate Road. The church also provided a grant, making it possible to produce the exhibition. For details contact Rob Levit at .

Mr. Levit, a musician and activist, is the founding director of Creating Communities, a nonprofit organization dedicated to the use of art, music and creativity as a vehicle for healing and education.

Creating Communities partnered with the Perinatal Loss Support Group of AAMC to produce this event in hopes of creating greater community awareness of this formerly taboo subject.

Mr. Levit has been working with the Nortons for five years for the Perinatal Loss Fundraiser.

"I admire what they do. They've had two children and they could put their loss behind them. But C.J. is still an important part of their lives. They raise dialogue about the issue. That's why I like teaming up with them."

Mrs. Norton said with their personalities and Christian background, they believe in giving back to the community.

"We want very much to keep this fundraiser and the program at AAMC running," she said.

"Our fundraiser every year is not a memorial service for our son, but a celebration to raise money for other people who are suddenly hit with it. We'd love to see it go for 100 years, or until babies stop dying."

She said she still talks about her son, whose birthday was last week.
"He's part of the family. His sisters ask about him all the time."


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