A Baby Dies, Suddenly : Support Group Produces Video to Aid Parents, Explain Syndrome

When his baby died, the young father was angry--so angry, he recalled grimly, “that I wanted to punch holes in the walls.”

Added a mother who lost her child: “I can remember a physical pain. It hurts like you’re stuck with a knife.”

And a small boy worried about the baby brother he barely got to know. “Now that Cory’s in heaven,” he said softly, “I was wondering, who’s going to teach him how to ride a bike? And sports? And stuff like that.”

These words of anguish--from families who lost a baby to a devastating malady called sudden infant death syndrome--are captured on a newly released, 30-minute videotape produced by local SIDS parents to help others cope with the shock of such a death. The tape has already won rave reviews, and health officials plan to begin distributing it statewide soon.

Each year, about 50 apparently healthy babies in Orange County--725 in California, 7,000 nationally--are tucked into their cribs for bedtime or a nap and never wake up.

And even though SIDS is the leading cause of death nationally for infants from 2 weeks to 1 year of age, medical researchers have spent decades trying--and failing--to unravel its cause. They have studied possible brain abnormalities, breathing disorders and heart malfunctions, but they still have found no clear answer. Meanwhile, parents must learn to live with their baby’s inexplicable death.

To help them, members in the Guild for Infant Survival’s Orange County chapter spent three years raising $48,100 for a videotape that offers solace--telling parents that they are not alone, that their baby’s death was not their fault and that, eventually, their lives can become full again.

“If I had had this when my baby died, it would have been helpful to hear other parents and know that grief has a beginning and an end,” said Guild President Lynne Trujillo, an Irvine nurse whose 2-month-old son died of SIDS nine years ago and who was one of the originators of the video.

“The end is not forgetting,” Trujillo continued. “You get through. But you don’t forget this child. And you have the ability to integrate it into your family history and be able to talk about him--although for a long time I could never say his name without crying.”

Led by Trujillo and guild Vice President Chris Elliott, a Fountain Valley school aide who also lost a son to SIDS, the guild in the summer of 1988 commissioned an Irvine company called Easy Brothers Video Productions to make a documentary.

After brainstorming sessions in Elliott’s family room, they gave Easy Brothers a rough outline for a script and arranged to tape the project at members’ homes.

To raise money, they held a golf tournament and won several Disneyland Foundation grants. They also persuaded the state Department of Health Services’ division of maternal and child health to underwrite $30,000 of production costs.

Recently, officials from the California SIDS Program purchased 80 of the $19.95 tapes and plan to distribute them to parent support groups and every county health agency in California.

Called “Living On,” the film offers a briefing on SIDS from medical researchers and a psychologist, and it depicts sometimes-tearful parents talking about the children who died. It is narrated by actor Lloyd Bridges and his wife, Dorothy, both longtime guild members. They lost a son, Garrett, to SIDS long ago, but they can still feel the pain.

“It was 44 years ago, but you never forget,” Dorothy Bridges said this week. Like many SIDS parents, she had put her healthy 3-month-old baby down for a nap. “When I went in to check on him, he was dead.”

She and her husband were glad to help with the video, she said. “In our day, there was no organization to comfort the parents who suffer the loss or to raise money for research. You just had to get through it as best as you could.”

Even today, Trujillo’s voice breaks as she describes the day her son, David Jordan, just 2 months old, died.

He was a happy baby with blue eyes, a ready smile and fuzzy brown hair “that used to stick out of the back of his neck,” she said. “He was the sweetest little guy . . . just as good as gold.”

On the afternoon of Dec. 9, 1981, she left him in his crib at his usual nap time, around 2 p.m. “I fed him. We coochie-cooed for a while, and I put him on his tummy,” she remembered. He was wearing a stretchy, yellow sleeper. He seemed fine.

The Trujillos had an intercom so they could hear the baby when he cried. She went upstairs to her home office, didn’t hear anything unusual. Three hours later, “I went down to pick him up at the usual time. . . . And I knew instantly that he was dead.”

The baby “was stiff and blue and cold,” Trujillo said. “I screamed for my husband, and he tried to give him CPR. I called the paramedics. When they came, they were very kind. . . .”

They had a brochure with them--the facts about SIDS, and they said, ‘This looks very much like a SIDS death.’ ”

Perhaps the most difficult time in their grief, SIDS parents and other experts say, comes after the funeral--when friends and relatives are gone, the nursery is empty and the parents are alone.

As is protocol in California, a public health nurse met with Trujillo to discuss SIDS. The nurse also passed along Trujillo’s name to the Guild for Infant Survival, and soon after David’s death, she got a call from another parent--Elliott--who had also lost a baby to SIDS.

Elliott was a “lifesaver,” Trujillo said. They spoke constantly on the phone, but it was a while before she could bring herself to attend a support meeting.

At Trujillo’s first meeting, the guild showed a 1975 film called “You Are Not Alone,” explaining the facts about SIDS.

Until now, that film, produced by the former federal Department of Health Education and Welfare, had been the only audiovisual tool for parents about SIDS. Trujillo and Elliott said they have shown it to thousands of support groups.

That film provides some useful information on SIDS, but it is dated and also flawed, they said.

Though they showed it regularly to parents, they also frequently had to apologize for it.

In one sequence, Elliott recounted, the father remarks to the grieving mother, “Well, next time you’ll have to be more careful.” And, she said, the mother-in-law suggests that if the mother had nursed the baby, it would not have died--perpetuating an old wive’s tale that can make grieving parents feel guilty when actually, experts say, the baby’s death could not have been prevented.

After showing the film in late 1989 to a support group, Trujillo, Elliott and several other guild members were fed up. “Most of the folks had left and we just said, ‘What are we going to do about this film?’ ” Elliott said.

They decided to make their own.

In addition to correcting misinformation and providing current medical information about SIDS, “we felt we needed a video that gave some hope,” Elliott said. The HEW film “left people feeling hopeless,” she said. “We wanted to try and say you’re not going to feel this way forever.”

They also wanted to make a videotape--not a film--so that SIDS parents, especially those who might never attend a support group, could show it in the privacy of their homes.

The video premiered to applause--and tears--at the guild’s annual brunch this February. Since then, it has received one rave review after another.

The tape explores the difficult issue of SIDS “tenderly,” said Dr. Rugmini Shah, state director of maternal and child health, whose agency shares the video’s copyright with the guild.

In Orange County, senior public health nurse Penny Stastny, who directs the Health Care Agency’s SIDS program, has already begun mentioning the video to new SIDS parents and using it at meetings.

Wednesday night Stastny played it to two dozen parents and day-care workers, all distraught after a baby died of SIDS at the center. Seeing the tape seemed to give parents and caretakers strength, allowing them to speak more easily about their reactions, Stastny said.

“The tape was great,” she said. “It’s like a mini-support group in the home.”

Like other experts who have watched the tape, Stastny cited several benefits from it.

“First, parents watch other parents” go through their grief, she said. “Also, they see parents who have had a SIDS baby, and even though those parents are grieving, they are doing OK--putting makeup on, progressing. For these (new SIDS) parents, they see light at the end of this.”

For parents whose babies recently died of SIDS, sometimes it is hard to believe there will ever be light.

After Elliott’s son, Michael Andrew, never woke from his nap on Aug. 1, 1973, she and her husband struggled to put their lives back together. They had marital problems. They blamed themselves for the baby’s death.

But two years later, when Orange County’s guild began, they eagerly joined, talking through their grief, and Elliott committed herself to helping other parents. Seven years after Michael’s death, they adopted a boy, now 13.

Of course, Elliott said, she will never forget her infant son. “You don’t put it behind you. You accept it. You learn to live with it,” she said. “And you try to make something good come out of it.”

FACTS ABOUT SUDDEN INFANT DEATH SYNDROME

Although sudden infant death syndrome strikes infants of all races and socioeconomic levels, certain groups of babies are considered at slightly higher risk: low birth-weight infants as well as premature babies, twins and triplets; infants born to teen-age mothers and to mothers who smoke. Boys are at slightly higher risk than girls.

* The largest number of SIDS deaths occur from November to March.

* Most deaths occur during the night or at nap time.

* Death occurs during sleep. The baby does not cry out and does not suffer, experts say.

* No association has been found between administration of childhood vaccines and SIDS.

* SIDS is not caused by suffocation or aspiration, though sometimes death certificates use such terms in error.

* Researchers believe babies die of SIDS for a number of reasons, not just one. They also believe that some subtle abnormality, which may be traced back to fetal development, predisposes some babies to SIDS.

* Since the cause of a SIDS death is unknown, there is no specific means of preventing it.

* More information about SIDS can be obtained by calling the SIDS Alliance at (800) 221-SIDS. A California hot-line number is (800) 369-SIDS.

Source: SIDS Alliance and Orange County Department of Health