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updated 2:54 PM CDT, Jul 28, 2018

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Christmas season is our time to reflect on Baby Sarah Elizabeth and her "gifts"

Newborn Sarah Elizabeth brought our family a special magic that Christmas season of 1973.

 

Her arrival four days before Christmas carried a particular excitement for 6-year-old Meagan and 4-year-old Michael that even surpassed the thrill of the packages under the tree. They'd sit on the couch and push as close as possible to mom and look on with fascination as Betsy held and fed the baby.

 

It was Sarah's only Christmas. The daughter who would be celebrating her 40th birthday this weekend died of Sudden Infant Death Syndrome exactly two months after her birth.

 

The passage of time has slowed the frequency of Betsy and my trips to the cemetery to visit her gravesite on her birthday to place a small tree on her "little angel" stone and reflect on what she would be like at that moment, first as a child, then a teenager, then as an adult. But we'll do so this year in honor of this special would-have-been birthday celebration.

 

Perhaps because our visits to Sarah's grave and reflections about her occur during this season when love, caring and hope are the focus, we long ago came to believe that good came out of the pain of losing her, Sarah's "gifts."

 

The first good was our involvement, in an effort to bring meaning from her death, with the state SIDS organization. Initially we sought support in our pain, and an understanding of the disease entity that had taken our baby, then eventually giving back by supporting other SIDS parents who needed help coming to grips with their loss.

 

We learned you take, give back, then move on, as time allows painful memory to be replaced by loving memory.

 

Betsy and I, after taking support from the SIDS group and learning about SIDS as an incident that occurs without warning and for which parents are not to blame, became part of the support group for other parents. I eventually became president of the state SIDS chapter and spoke to groups of parents around the state.

 

We made lifelong friends among the healthcare professionals andSIDS parents. The former included Bruce Beckwith who was with Children's Orthopedic Hospital in Seattle and Abe Bergman, then assistant director of pediatrics at UW, who devoted their lives to assisting parents while seeking answers to the why and how of SIDS. The friends included the late State Supeme Court Justice Fred Dore and his wife Mary. Dore, as a state senator, and his wife, a forceful business professional, helped bring about state legislation that helped ensure that parents who had lost a baby were not treated as criminals.

 

Reflecting on Sarah has caused me to reflect anew on SIDS itself.

 

Because SIDS was, and remains, a disease entity that strikes infants without warning and with a cause unknown, it has remained fertile ground for what Bergman always referred to as "the theory of the month" that would pop up and get media attention.

 

As a journalist with UPI then, I was able to touch base with experts and shoot down, with offsetting visibility, the cockeyed theories, each of which would bring renewed pain to parents who, despite logic, often harbored a sense of guilt that they were somehow at fault for their infant's death.

 

Those recent thoughts about what's up currently with SIDS led me to contact Bergman about any progress with the disease.

 

"There is some good and some bad," he offered, noting that there is some solid research in neurophysiology and genetics into "specifically what happens to the brain centers controlling breathing and sleep during the body's shift from fetal mode to regular mode between the 2nd and 4th month of life."

 

But he noted that the research is into learning to understand the mechanism of how it happens, adding "prevention is quite another thing."

 

Then there's "the bad."

"A reversion to the attitudes held by coroners and medical examiners 40 years ago, which I call 'the revenge of the forensic pathologists,' many of whom always felt that parents were killing their kids," Bergman said.

 

Bergman, now 80, joined with Beckwith in the 1960s to wage a national campaign that led to research, changed medical and law-enforcement practices and actually gave what was, at best, called "crib death" the medical name Sudden Infant Death Syndrome.

 

"The disappearance of parent-advocacy groups and the fact there's no longer strong leadership to take the offensive on this has left pathologists not cowed anymore," says Bergman, who still writes in national medical journals to try to call attention to the problem of a professional reluctance to use the SIDS diagnosis.

 

"Yes, there are fewer actual SIDS cases, but the biggest reason for the 'reduction' by far, is a return to the dreaded words to explain the deaths: suffocation, asphyxiation, strangulation, and most commonly, 'unknown,'" he said.  "There are several counties in Washington State where the term SIDS is never used," he added.

 

But he emphasized that the King County Medical Examiner's office "has not fallen for that garbage. Under the leadership of Dr Richard Harruff, the Medical Examiner's office demonstrates how scientific rigor and compassion to families can go neatly together."

The most important "gift" that came following Sarah's death was that two years after she died, we had another baby girl, one who might not have been planned if there hadn't been a void for us that needed filling.

 

Eileen Elizabeth had a special role as a "subsequent child," well-discussed in literature provided to SIDS parents. For the first fewmonths, I would creep into her bedroom to check her as she slept, wanting to be sure that if she too became a SIDS baby, that I would be the one who discovered it.

 

Eileen has grown to adulthood, now herself the mother of three girls, including Sarah, her first born. She has occupied a special place in the love and affection we have for our children, not as our Sarah's replacement but as her own special person. 

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