Daughter’s death leads to mom’s advocacy for biosafety

Marci Gore • Jul 15, 2013 at 11:38 AM

Caryl Griffin says sometimes it’s hard to understand why bad things happen to good people. “It’s hard to get your arms around life and what it means when there are bad times, especially when you’ve worked very hard to be faithful and allow God to work in your life. The Bible says, ‘You’ll be blessed.’ So, when things happen that don’t feel like a blessing, like the death of a child, it is then you wonder, ‘Where is God?’”

In 1997, Caryl experienced a parent’s worst nightmare when her daughter Elizabeth “Beth” Griffin died at the age of 22 after contracting a virus while working as a primate research assistant.

Caryl worked as a nurse for more than 30 years and, today, is an ordained elder with the Holston Conference of the United Methodist Church. Caryl has spent much of the past 15 years working through her grief. But with the help of her late husband, Dr. William Griffin, and Beth’s sister, Kimberly Griffin Hicks, Caryl has found solace — and hope — in traveling the globe to educate others about how to encourage safe practices in research facilities.

Following her graduation from Dobyns-Bennett High School in 1993, Beth moved to Atlanta, Ga. to attend Agnes Scott College. She completed a double major in biology and psychology, was a member of the Modern Dance Team, and was a paid researcher in the biology department. Beth graduated with honors from Agnes Scott with a bachelor of science degree in May 1997.

Beth was working as a research assistant at Yerkes Regional Primate Research Center at Emory University in Atlanta in the fall of 1997 where she was engaged in behavioral research on hormonal influences in Rhesus Macaques — or the Rhesus Monkeys — and was in the process of applying to continue her pursuit of graduate studies and research in the field of biological/psychological sciences.

Caryl, answering what she says was a very strong calling to go into the ministry, decided to attend the Candler School of Theology at Emory University at the same time Beth was a student there.

“Beth said, ‘Mom, do this!’ She was there to help me move into my apartment. She had her own apartment and her own friends. But she spent a lot of time with me, too. It was a lot of fun,” Caryl said.

But then, just three months after Caryl got to Emory, she got a call from Beth, saying she had been splashed in the eye while performing annual physicals on 100 monkeys in a research compound. This was in October of 1997.

Eight days after Beth was splashed, the first symptoms of a problem appeared — Beth had “matter” exuding from her eye. Caryl says Beth had worked with monkeys long enough to know she could be in serious trouble and she needed help quickly.

She went to the emergency room, where she was diagnosed with pink eye. Beth’s fears that she had been infected with the Monkey B Virus were ignored by the ER staff, Caryl said.

Beth tried calling the Office of Infectious Diseases and was told she needed a referral before she could be seen. A phone call to her internist to obtain a referral resulted in being told she needed to obtain her emergency room records first. Eleven days had passed since Beth was exposed.

The internist referred her to an ophthalmologist instead of the Office of Infectious Diseases. The ophthalmologist said Beth had Cat Scratch Fever. She was placed on an antibiotic. Despite Beth’s pleas, she still was not tested for the Monkey Virus.

Caryl says Beth’s condition continued to deteriorate. She developed a severe and pounding headache, but still could get no help from the medical community. After more phone calls, another visit to the ophthalmologist and Caryl’s insistence her daughter see an infectious disease physician, Beth’s diagnosis was finally confirmed.

Two weeks after she had been splashed in the eye, Beth was tested for the Monkey B Virus, or Macacine Herpesvirus 1. Just as she suspected, Beth’s results came back positive.

According to the Centers for Disease Control and Prevention, this virus is commonly found among macaque monkeys, including rhesus macaques, pig-tailed macaques, and cynomolgus monkeys (also called crab-eating or long-tailed macaques), any of which can harbor latent B virus infection and appear to be natural hosts for the virus. Monkeys infected with B virus usually have no or only mild symptoms.

Infection with B virus is extremely rare in humans. However, when it does occur, the infection can result in severe neurological impairment or fatal encephalomyelitis if the patient is not treated soon after exposure.

In Beth’s case, treatment began too late.

Less than a month after being exposed to the virus, symptoms of lower extremity paralysis appeared and complete paralysis progressed quickly. Her conditioned worsened daily and on Dec. 10, 1997 — six weeks after ocular exposure to Macaine Herpesvirus 1 — Beth died.

Still in the midst of their own grief, Caryl says, at the insistence of Beth’s classmates, she and her late husband made a decision to try to change the system. In 1999, the Elizabeth R. Griffin Research Foundation (ERGRF) was established to help prevent further tragedies like Beth’s.

Jim Welch, a longtime family friend of the Griffins, serves as the executive director of the foundation.

“I cannot say enough about Jim. He was able, when we were in such pain and it was hard for us to speak, he was able to be our voice. And when people didn’t know if they could trust us, he could build those trusts. That was very important. It would be 10 years before I could speak publicly in a caring, grace-filled way about this,” Caryl said.

Today, the ERGRF continues to grow and supports projects not just in the United States, but also Africa and the Middle East by developing laboratory biosafety and biosecurity as well as occupational health for laboratories in hospitals, public health and research facilities.

One of the foundation’s earliest accomplishments included its efforts with the Association of Primate Veterinarians to create Medical Alert Information Cards, now used throughout the world by people who work with macaques.

Caryl said that primate workers carry those cards so that if they exhibit certain symptoms, doctors are alerted to the fact that they may not have the same virus as someone from the general public.

“In medical schools all over the United States and Europe, the adage that medical students learn is in diagnosis, when you hear hoof beats think of the horses, not zebras. That’s what killed Beth,” Caryl said. “Today, we foster card-carrying employees of research labs so that when they go to the ER, they present the card and there’s an advocate for them. The rule of thumb for those working in the research labs is when you hear hoof beats, rule out the zebras first. Pick up the symptoms early. Many of the viruses and diseases begin with flu-like symptoms. How can you tell them apart from regular flu? You can’t unless you study them and know what to look for.”

In recent months, Caryl, who resides mostly in Knoxville now with her new husband, Rick Russell, has spoken to audiences as close to home as King University in Bristol and as far away as Malaysia.

“I had no idea [the foundation] would ever be this big and this far-reaching. And for me, that’s been the other life lesson,” she said. “It is what is right in front of you that God opens to you. The doors are there. But do you see them? Can you find the hidden treasures even in the midst of the greatest tragedies you can imagine? Going to the Middle East, doing a keynote address, how could I, losing two daughters [Caryl and her late husband lost another daughter as an infant to a birth defect] and now a husband, how could I even relate to them, who have lost whole families and communities and entire ways of life? But it’s a similar process. There’s treasure there, too. People have come to me who have much greater tragedy than I to say, ‘God is there. There is so much joy in our lives.’ Joy will come. It may not be tonight. You may not feel it tonight. But it comes.”

The foundation’s funding comes from grants, partnerships with larger organizations and individual donations.

For more information about the Elizabeth R. Griffin Research Foundation, or to make a donation, visit www.ergriffinresearch.org or call (423) 612-7233.

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