Sudden Infant Death Syndrome

updated 2:54 PM UTC, Jul 28, 2018

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

Wednesday, 18 December 2013

Mike Flynn

Flynn's Harp People Issues

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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Reflections on memories made, but not left behind, in family home of four decades

Wednesday, 31 October 2012

Mike Flynn

Flynn's Harp People

For four decades, it was the place where three children grew to adulthood and where their laughter and tears, and those of eight grandchildren, echoed from walls and windows that were always decorated by Betsy (mom and grandma) for the appropriate holidays.

But the big old four-bedroom colonial in Seattle's desirable Mount Baker neighborhood had become too large for a now-aging couple, so the time to find a retirement apartment had arrived.

The attraction of moving into inviting new downtown-view quarters at Horizon House, one of Seattle's more sought-after facilities for retirees (and those not yet retired), eased the challenges of the move, particularly since familiar faces from Seattle's business community appeared around each corner.

But with the unfolding challenge of rapidly, and not easily, downsizing to take 40 years of accumulated items from 2,500 square feet plus basement into a place half that size, the memories surrounding the rooms, and many of the items, hung in the air.

In one bedroom, there was the bitter-sweet memory of the arrival of the daughter, born a year after our arrival back in Seattle from the Los Angeles area, who too briefly slept in her crib there.

Sarah Elizabeth, born four days before Christmas in 1973, gave a special meaning to that holiday season. Her brother and sister would sit on the couch and push as close as possible, looking on with smiling fascination while mom held or fed the baby.

Two months to the day later, we found Sarah dead in her crib, a victim of Sudden Infant Death Syndrome (SIDS). In an effort to bring meaning from her death, Betsy and I became involved in the state SIDS organization, first taking support in our pain, 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, once the realization comes that painful memory is replaced by loving memory.

The pain of Sarah's loss found a counterpoint two years later with the excitement of the arrival of Eileen, who bore the burden of being the "subsequent child," a description hung by psychologists on children born following the death of a sibling.

I made a point of being the one to check the sleeping Eileen each night as she lay in the same crib, though different bedroom, so that if she too had died, I'd be the one to discover it this time. As she passed the "at-risk" first year, the fatherly fears passed. But she retained, as the years passed, a special place in the family.

An enduring image for me was of the nightly routine we had when the children were young, of my singing them songs after they had been tucked into bed. I can still hear: "One more song please, daddy!" and Betsy admonishing: "You're being taken advantage of."

Those songs of childhood became part of our family culture, particularly when Michael grew into a young man and learned to play the guitar. As he would be sitting in the living room, in the final years before he married and began raising his own family, he'd be playing and singing to himself and dad would walk in and say: "play me a song, Michael."

Inevitably, it would be one of those songs I sang to Meagan, Eileen and him.

But sometimes it was Dan Fogelberg's "Leader of the Band," which Michael had learned to sing and play. And since it was one of his father's favorite songs, we'd sing it together. And again.

Then there was the room where Meagan and her Brownie troop gathered for their Monday afternoon activities under the guidance of her father, who turned out to have been the first male Brownie leader in the state.

That came about because when Meagan and a couple of friends found there were no Brownie groups they could join, her father said "let's see if this equal opportunity thing flows both ways. Is a man acceptable to lead a troop of girls?"

When I volunteered, the Brownie moms, to Betsy's amusement, called my bluff, welcomed me to the Brownie leaders' team, gave me the largest group of girls. But the moms were constantly supportive and available for questions from the rookie leader who was frequently panicked about creating projects and keeping a dozen second-grade girls focused. And Michael became a member of the group, possibly the first male Brownie in the state.

The empty spot by the front French doors after movers had cleared the area made it harder to picture the Christmas tree that occupied the spot each holiday season, to be surrounded by excited children, or grandchildren and their parents. And the absence of the sofa and chairs made it difficult to recall the candy-filled plastic Easter eggs that were inevitably hidden in and around them.

As we returned in recent days to check out the now-empty house, with its unfamiliar echoes as we moved through each room, an important reality for us, and for all those making large life changes, became clear. The memories don't remain behind in the place where they were made. Rather they travel with us, an essential part of the experiences we gather and carry through the years. Memories to be recalled and savored. Forever young.

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