Rebecca Righeimer

A while ago I blogged about a 4 year-old girl's death, a girl I baby-sat for and whose sisters I still baby-sit for a few times a week, a close family friend, we consider them almost cousins, who died suddenly from an undetected heart attack. Yesterday, April 6, there was an article about her in the Register under the page 2 of the Local section. (In case any of you want to check it out.) The article explained her parents response to her sudden death and what action they took about her unexplained death.

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Quest for Cause, and Closure, in Child's Death
by Frank Mickadeit

A few days after I wrote about the heartbreaking sudden death of little Jake Robert of Yorba Linda, I was winding down the week at a certain Friday-afternoon hangout, when Rupublican operative, Jim Righeimer came up and started speaking in a fast, intense emotional tone.

It turned out to be a sobering issue -- the death of his 4 year-old daughter, Rebecca, in 2003 and how he empathized.

"People think you don't want to talk about the death of your child, like it's taboo," he said. "But you really do."

And talk he did as he laid out the saga of Rebecca's death and his wife Lene's two-year search to find the cause. ABC will run a segment about Rebecca on Primetime at 10 tonight.

Rebecca Righeimer was a little 4 year-old with blue eyes, rosy cheeks and light brown hair she sometimes wore in pigtails. The oldest of two girls, she had just started school at Fountain Valley Montessori. She was seemingly healthy.

On the night of December 27, 2003, Lene had just given Rebecca a bath with the girl dropped to the floor and, in, Jim's words "started growling and making animal sounds." Lene first thought she was playing, but when Rebecca didn't respond and then stopped breathing, her parents immediately called 911. Paramedics arrived within minutes and rushed her to the hospital.

Although doctors got her breathing again, she had been without oxygen or with inadequate amount, for 51 minutes. She was being kept alive by a machine, and showed no brain activity. After agonizing soul searching, her parents decided to take her off life support.

In the days that followed her death, there was some confusion about whether an autopsy might be desired, but by the time the decision had been made to do one, her body had been embalmed. The coroner blamed pneumonia.

The Righeimers beleived that even if she had developed pneumonia by the time she died, that wasn't the reason she had suddenly gone into seizures and stopped breathing. They agonized over whether it was something they had inadvertently done or something they had missed.

They couldn't put it behing them, particularly Lene. Besides the guilt and the not knowing, there was a deadly practical consideration: What if Jim or Lene carried a rare gene that created a condition that had caused Rebecca's death? What if their other daughter -- now daughters, actually, with the birth of a third after Rebecca died -- carried the gene?

"I Googled and Googled night and day to find (kids who had died in) similar situations," Lene says.

Her research led her to correspond with researchers in New Zealand, Minnesota, Salt Lake City, San Diego and at UCLA. They traveled to seminars and submitted to DNA testing spending, $20,000.

Increasingly, it looked like Rebecca may have died of Sudden Arrythmia Death Syndrome, or SADS, which is caused by a glitch in the heart's electrical system. It can be identified by an EKG or a DNA test for a specific marker. The problem was, there was no reliable EKG record for Rebecca and her blood was drained before the autopsy, so no proper DNA sample was available. Evidence of this type of marker can't be obtained from tissue.

During Lene's research, though, somebody noted that when a child is born, blood tests are run. Lene found out California keeps them and that Rebecca's was stored in Richmond in the form of 15 or 20 drops splattered on a card.

Researchers at the Mayo Clinic told her no one in the U.S. had ever been able to use a blood card to find the DNA marker. But they'd try.

On March 20, Mayo called. Rebecca's DNA had the marker.

Still to be determined is whether it was passed on genetically or occurred by random mutation, which is rare but what doctors believe happened. DNA testing has already eliminated Lene; Jim and the other girls will be tested. Knowing is critical because if they have it, SADS is treatable in most cases.

About 1,000 kids a year in the U.S. die of SADS. It's estimated as many as 1 in 5,000 kids has some form of it. Go to www.sads.org
for details.

The Righeimers have a fourth daughter due May 1.