When Stephanie Edwards pulls into Palm Mortuary on Eastern Avenue, it is late afternoon and the sun is setting. She parks her car close to the curb at the Garden of Innocents and begins her daily ritual. She removes trimming shears, Windex and paper towels from the trunk of her Camry. Edwards is there to tend to her deceased 2-year-old son, Donovan, and the toddlers and infants buried near him.
The mother found herself visiting the cemetery daily – for 231 consecutive days. Somewhere along the line she became well acquainted with other parents still grieving for their children – children who died from disease, misadventure and some even from neglect.
But Edwards still has no explanation why her apparently healthy son died. He just didn’t wake up one morning, she said. The days since have been a nightmare of trying to understand, of finding some kind of closure.
Donovan Edwards died on April 3, 2003, and, after two months of exhaustive investigation, the Clark County Coroner’s Office could find no physical cause of his death. Edwards, however, found support along the way through the New Jersey-based Sudden Unexplained Death in Childhood program.
“They’ve helped a lot,” she said. “They have dedicated doctors and professionals who are looking at Donovan’s medical records trying to help me figure out what happened.”
Although SUDC is not as well known, nor as prevalent as SIDS (Sudden Infant Death Syndrome), there is a growing awareness of this baffling syndrome that has touched the lives of families locally, like Edwards’, and throughout the world.
SUDC is a “diagnosis of exclusion” for children over the age of 12 months. They die suddenly and unexpectedly with no diagnosis or cause following a thorough case investigation. A diagnosis of exclusion is given when all known and possible causes of death have been ruled out. This entails a thorough exam of the scene of the death, complete autopsies, toxicology reports and a medical and genetic history of the family.
Edwards answered an exhaustive 25-page questionnaire supplied by the SUDC program. The Clark County Coroner’s Office further cooperated by releasing the autopsy and pathology reports on her son to Dr. Henry Krous, director of the SIDS/SUDC Research Project in San Diego.
In a telephone interview with Krous, who is also the Director of Pathology at the Children’s Hospital of San Diego, he said, “SUDC is not a diagnostic term that has yet been accepted. We are still doing research and we have only had opportunity to study about 40 cases. We are very thorough and it’s a slow and arduous process.”
Krous stressed how important it is for coroners across the country to become aware that there is a research facility available for parents of SUDC.
“Losing a child and not knowing why is absolutely one of the worse things that could ever happen,” Krous said. “I can’t imagine how the parents survive this; it takes incredible strength.”
Clark County Medical Examiner Dr. Rexene Worrell said that had it not been for Edwards, she would not have been aware of the SUDC study group.
“I was happy to share my records,” Worrell said. “If someone with more experience and knowledge or areas of expertise could find something I had missed or overlooked, I wanted to know. It’s frustrating and a horrible thing as a physician, to not have an answer for a parent when a child dies.”
Worrell said she’s had several unexplained infant deaths, but not many deaths of older children like Donovan. Seldom does she see children older than 2 years old.
According to Worrell, maybe 1 percent of her infant mortality cases end up undetermined. She added that, “With infants, the cause of death can be more difficult to diagnose. Older people usually have heart problems or cancer, more identifiable causes.”
Edwards herself is a cancer survivor. She was diagnosed with cervical cancer in 1996. While pregnant with Donovan, she had to see a specialist every two weeks. Doctors made sure her cervix wasn’t too thin as a result of previous biopsies and tissue-freezing procedures used to halt the cancer.
“When I went in to deliver him, the placenta ruptured,” Edwards said. “They had to do an emergency c-section. Donovan came into the world weighing a healthy 6 pounds, 9 ounces and was 19 inches long.”
At the cemetery, the wind is blowing. The harsh desert wind cuts through Edwards’ clothing. Her hand trembles as she brushes pine leaves off a nearby infant’s plaque. Her son’s detailed marble slab, complete with pictures of her and him inlaid in the stone is spotlessly clean and surrounded by flowers, teddy bears, toys and a solar-powered lantern.
“I think I’ve started a trend here,” Edwards said, glancing about at the decorations and lanterns adorning the surrounding burial sites. “Nobody had lanterns before.”
The SUDC program is a national foundation created in September 2001 by another bereaved mother, Laura Crandall, whose daughter died in 1996 at 15 months old while taking a nap.
The Crandalls live in New Jersey and lobbied extensively after the death of their child for a new child-death investigation bill. The bill was signed into law in May 2000 in New Jersey and standardizes unexplained child deaths between the ages of birth and three years of age as SUDC. Crandall is currently the Program Director of SUDC Parents.
“When I contacted SUDC, I was in search of an answer,” Edwards said. “The question I will always ask is ‘why’ and ‘are there other parents going through the exact same thing as me.’
“I always feel safe in talking about Donovan to the SUDC group. They are my support and my friends.”
Krous, whose research is funded in part by the CJ Foundation for SIDS, said that the advantage of a diagnosis of exclusion such as SUDC helps take any blame or sense of responsibility off the grieving parents.
“It’s amazing how people turn their grief into something positive for someone else,” he said.
The seemingly endless questionnaire parents like Edwards are asked to complete to aid in the research of SUDC, covers everything from genetics and drugs to what water source the family used. It also inquires if the child flew in an airplane two weeks prior to death and if family pets were healthy or not. There is an entire section devoted to “premonitions.” The most painful for a parent might be the pages requesting an exact description of when and where the child’s body was found.
“I worked extensively on Donovan’s case,” Worrell said. “As forensic pathologists [at the Clark County Coroner’s Office], we do pool our thoughts and ideas on cases. Definitely in the future we could contact the SUDC program with similar cases. It’s important to let pathologists around the country learn about this research.”
Edwards has learned there is still hope and meaning left in her life since that heart-stopping moment in April 2003.
“I will stay involved with SUDC for a long time to come and hopefully,” she said, “I will be able to comfort another mother or father who lost their child like me.
“Little things in your life come and go, like your car or a job, but a life doesn’t. Just because someone has passed on doesn’t mean they don’t matter anymore,” Edwards continued, brushing still another infant’s plaque with her hand – a plaque spotlessly clean. “Some people think I’m nuts for coming here every day. I come here because this is where I feel closest to my son. I don’t want Donovan to be forgotten.”
Her car is parked at the curb in front of Donovan’s grave. It’s much darker now as she approaches it. The lantern, nestled among the stuffed animals, winks in the early night.
Clasping her hands, Edwards looks back and whispers, “There’s my little Don-Don.”
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