Founder of Any Baby Can takes on the issue of stillbirths

By Lynnell Burkett
Express News - San Antonio
December 7, 2003

Imagine yourselves as prospective parents. You excitedly anticipate the birth of your first child. After a sonogram indicates it is a girl, you carefully select a name, settling on a combination of names from two beloved grandmothers.
Next is decorating the nursery, which entails a minor remodeling job, but that's OK because the handmade curtains, blanket and bedclothes take time also.

After two showers — one for family, another for friends — preparations are complete.

The evening before the expected birth, the mother finds her usually active unborn child unusually subdued. Thinking little of it, the nervous parents waken during the night as labor pains begin and head for the hospital.

Two days later, they return home, alone and grieving. Their first child, their little girl, was born dead.

You likely have read little about such heartbreaking events, even though they are all too common. More than 26,000 stillbirths occur in the United States — either in the final months of pregnancy or at the time of birth. For more than half them, there is no explanation for the death of the healthy and wanted fetus.

That means that every day of the year, more than 70 U.S. families go through some variation of this life-changing experience.

It also explains why San Antonian Marian Sokol, creator of Any Baby Can, which has provided help for thousands of families with ill babies, has taken on the issue.

That is why she commutes between the national office of First Candle in Baltimore, where she is president, and her long-time home in San Antonio.

Sokol, who has a doctorate in early childhood special education, has devoted her adult life to the welfare of young children and their families. Before and after she founded Any Baby Can, she taught child development courses at local colleges and universities.

Little did she know when she announced her retirement last spring from one demanding job, after more than two decades as executive director of Any Baby Can, that she would move directly to another one with nationwide impact. But from her retirement June 30, she moved the next day to her new calling.

First Candle emerged from what had been the SIDS Alliance, an organization that advocated for research, education and support for families of babies who had died from Sudden Infant Death Syndrome.

Sokol had become involved in that effort years ago with a new education effort encouraging parents to place their children on their backs to sleep rather than on their stomachs and not to put them in bed with adults. During the next decade, deaths from SIDS decreased from 7,000 in 1992 to 2,100 more recently, Sokol said.

From its focus on SIDS, the organization became aware of the unspoken tragedy of stillbirths, a problem of even greater magnitude than SIDS and one that may have shared characteristics with SIDS. Some mothers who lost a baby to SIDS either previously or subsequently suffered a stillbirth as well.

Sokol chaired the board of the advocacy group as it made its transition to First Candle in November 2002 because the organization wanted to focus on the survival and health of children, she explained, allowing every child to reach its first birthday.

After a yearlong search for a new president, board members surprised Sokol, telling her they wanted her to take the job. In fact, they agreed she should remain based in San Antonio, with an executive apartment in Maryland. After all, modern communications — cell phone and computer — allow her to work from home and, in any event, much of her job entails nationwide travel.

"It was not what I intended," Sokol said. "I expected to go back to teaching college. I could not imagine being president of a national organization and leaving San Antonio. But they (the board) made it possible. They figured out how to do it through virtual communication."

Sokol says she didn't hesitate at the offer.

"It took no more than a day to decide — it felt right.

"Having the ability to work at the national level to impact public policy — that's exciting," she said.

When the organization first began looking at stillbirths, it faced the same situation as in the early days of SIDS — so much was unexplainable, so little research was available and almost no research was under way.

But stillbirths entail even more problems. Is the stillborn a baby or a fetus? To the parents, the loss is of a baby. To the law, the term may remain fetus.

Take San Antonio, where, Sokol said, 25,000 babies are born each year and 2,500 stillbirths occur. Texas law requires that fetuses more than 20 weeks old be buried. But what about a funeral? How do the parents commemorate a baby born dead?

Should such babies be issued birth certificates? In most states, they were not. A national drive saw Arizona enact a law issuing birth certificates, and 12 states have such laws now. Texas is not among them.

Such concerns bring stillbirths perilously near abortion issues, from which advocates want to stay far away.

Sokol sees First Candle's mission as to raise awareness of the tremendous number of stillbirths, develop strategic partnerships, advocate for public policy and funding to help prevent these early deaths and provide support to parents who are grieving for lost babies.

The first step is simply gathering information on stillbirths. Sokol points out that there is no data on the cause of death prior to delivery, no standard interview, no uniform autopsy, no uniform protocol, no death-scene investigation. So she finds herself walking the halls of the Capitol, speaking to members of Congress, writing grants, talking to people all over the nation.

Success has come in the last couple of years through a $3 million research grant that the National Institutes of Health will use for research on stillbirths.

How does Sokol, who is so full of life and energy, continue to handle, year in and year out, working with sick and dying babies and families who face so much tragedy?

"I'm not as much in the trenches as those who work directly with the families," she observed. "I'm blessed to be able to help, to see families healing, to see the progress we've made.

"I rejoice in photographs of subsequent children (of these parents)."

She also is buoyed by her own family that now includes grandchildren. She finds great joy in "being able to spend weekends with my normal, healthy grandchildren, in realizing the value of life."

Wherever the cause is nurturing healthy children, Sokol is there. San Antonio is fortunate that, although she advocates on a national stage, she still calls San Antonio home.

Oh, and she still is on the board of Any Baby Can.

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