- Associated Press - Sunday, December 13, 2015

Sally Garcia still doesn’t know what went wrong with her baby.

When the tiny girl was born on May 25, 2012, she weighed 3 pounds, 6 ounces, measured 19 inches long - and was missing most of her brain and skull.

“I hoped that when she was born she would be perfect and nothing would be wrong,” recalled Garcia, 26, of Prosser, about an hour outside of Yakima. “They pulled her out and my mom started to cry. That’s how I knew she wasn’t OK.”

Dark-haired and dark-eyed, Maria Rosario Perez lived 55 minutes that Friday afternoon before she died of complications of anencephaly, a rare and fatal birth defect. A nurse had just enough time to make casts of the baby’s hands and feet so the family would have something to keep.

About two in every 10,000 babies in the U.S. are born with anencephaly each year. It occurs when the neural tube, which forms the brain and spinal cord, fails to close early in pregnancy.

What happened to Maria was a rare tragedy, a fluke, doctors said.

But records show at least 40 other mothers have lost babies to the disorder in Yakima, Benton and Franklin counties since 2010 - a rate as much as five times higher than the national average.

State and federal health officials have been trying for two years, without success, to identify what’s behind one of the largest documented clusters of anencephaly in U.S. history. A lack of folic acid, a B vitamin, raises the risk, and anencephaly is generally more common in Hispanic women, but exactly why the rate is so high in Central Washington has confounded state experts.

“It’s a high priority for our department,” said Dr. Kathy Lofy, Washington’s health officer.

But a Seattle Times investigation finds that even as cases continued to climb, health officials tasked with solving the mystery have missed opportunities for answers.

They have not contacted most of the women who lost babies to anencephaly. They have not collected samples or conducted tests that could reveal potential genetic or environmental links to the problem. They have not reached out as effectively as possible to tell families how the disorder might be prevented.

And, as the government review of the cluster moved forward, state Medicaid officials didn’t change rules that limited women’s access to free folic-acid supplements, including in the three affected counties, where up to 80 percent of births are paid for by the state.

Outside experts said the probe underscores both the difficulty of investigating birth-defect clusters, which are rarely unraveled, and the need for vigorous effort.

“I judge that it will be unlikely that we’ll find anything that will be compelling - and I think we need to give it a try,” said Peter Langlois, a senior epidemiologist for the Texas Birth Defects Registry, who is advising Washington officials.

The interviews, tests and outreach aren’t required, but all are included in standard protocol developed by researchers from the Centers for Disease Control and Prevention (CDC).

“It breaks my heart that there’s not been more productivity,” Allison Ashley-Koch, a professor of medicine and biostatistics at Duke University, said of the investigation. She is compiling the largest genetic study of anencephaly in the world and has followed the Washington cluster.

Two years ago, Ashley-Koch said, she and her colleagues contacted CDC officials, offering to help collect biological samples and analyze potential environmental contaminants. Such analysis could offer insight into the disorder.

“Basically, they just said, ‘Thank you, but no thank you,’?” Ashley-Koch said. “If we don’t get in there and start collecting some samples - whether it’s my group or the CDC - I just feel like it’s an opportunity missed if we don’t learn from this.”

CDC officials and Cathy Wasserman, the state epidemiologist in charge of the investigation, said they don’t recall Ashley-Koch’s offer. But Wasserman said state officials have relied on a panel of experts and pursued every avenue deemed important.

“I think we’ve been pretty diligent on this issue,” she said. “We’re trying to be thorough in responding to community concerns.”

But more than three years after her baby died, Sally Garcia has no answers.

“Something’s going on and someone needs to tell us,” said Garcia, who shares a crowded apartment with her husband, Santiago Acosta, 30, an agricultural worker, and her three children, Calvin, 8; Daniel, 2; and Josefina, 10 months.

A nurse sounds alarm

Washington’s cluster was discovered after a nurse, Sara Barron, noted in 2012 that two babies with anencephaly were born within weeks of each other at the 25-bed community hospital in Prosser, PMH Medical Center.

Disturbed by the spike, Barron notified state health officials, who reviewed birth records and found nearly two dozen cases in the three-county area in the previous three years.

The CDC launched a study that examined medical records of 27 women, including Garcia, who had babies with neural-tube defects in the counties from 2010 to 2013. Their records were compared with those of 108 women with healthy pregnancies. The analysis showed the rate of spina bifida, one type of defect, was far lower than the national average, but anencephaly, much higher.

“A clear cause of the elevated presence of anencephaly was not determined,” the 2013 report concluded.

The study stopped there. No women were interviewed - or told they were among dozens in the region who’d lost babies to a rare birth defect. At the time, CDC officials said they lacked funding for a “boots on the ground” epidemiological study.

State makes a pledge

With the rate still rising, Washington state health officials launched an investigation in June 2014, tapping a 16-member advisory panel of medical experts, researchers and community members. The group pledged to find ways to reduce the number of cases, improve reporting and determine whether more investigation was necessary to find the cause - or causes.

“Everyone is doing what they can and more,” said Dr. Christopher Spitters, a panel member and health officer for the Yakima Health District. “The inability to pinpoint one or more culprits certainly is not for lack of trying.”

Washington health officials have analyzed existing reports on contaminants such as nitrate levels in drinking water and pesticide use in agriculture, and considered whether there could be genetic markers for women more likely to have babies with neural-tube defects. But they have collected no blood samples, performed no genetic tests and conducted no examination of water, soil or pesticide levels in the region - and have no plans to do so.

The advisory committee has agreed with Wasserman that further tests aren’t warranted by existing evidence. “We are a state health organization; we are not a research organization,” Wasserman said.

In January, state officials began interviewing mothers of infants with neural-tube defects, including spina bifida. So far, they’ve interviewed 15 women, including 11 of the 41 women who lost babies to anencephaly, Wasserman said. Seven more potential interviews have been identified since April, including three mothers of babies with anencephaly, but health officials are still following up, she said.

They will compare the answers with those from healthy control-group members, according to CDC protocol. Results should be available by spring.

“I think that there is an urgency,” Wasserman said. “I don’t think the time it’s taking is unusual.”

Experts in birth defects, epidemiology and health communication say the problem may not be with what health officials have done - but what they haven’t done.

“I would suggest that there seems to be a gap in the research so far,” said Linda Neuhauser, a clinical professor at the University of California, Berkeley, School of Public Health, who specializes in community-health interventions. “They haven’t actually gone in and interviewed (all) the people yet … Because if you don’t have that, you don’t have some windows into possible causes.”

Sally Garcia, eager to share her story to help others, said she’s disappointed at not being contacted.

The omission is by design. State officials plan to talk only to women with due dates within two years of fall 2014 to include them in the study. That method excludes Garcia, whose daughter was born in spring 2012.

Women pregnant a few years ago might not recall the information solicited in the survey, such as the foods they ate, the medications they took and other details, Wasserman said.

But with 41 women involved, the experience of each one is potentially valuable, said Dr. Lowell E. Sever, a retired CDC birth-defects expert who has studied neural-tube defects in Washington state.

“You can have information that’s valuable, even if it’s not scientifically valid,” said Sever.

Even those who fall within the study limits may be missed. Researchers get women’s names and phone numbers from health-care providers, then send letters to the last known addresses. But in some cases, the women are difficult to find.

If researchers call 10 times and get no answer, they’ll stop trying, Wasserman said. Email, social media and home visits, have not been tried.

Outreach workers unaware of effort

With no known cause for the cluster, health officials are focusing on raising awareness about the importance of women taking folic acid before pregnancy. Wasserman points to updated websites, “blast fax” messages to health- care providers, and presentations about the cluster to area hospitals, health conferences and state meetings.

The state ran 3,000 public-service radio spots about folic acid between May and July this year and distributed 12,000 brochures to community colleges, clinics, nail and hair salons, and other sites, she said. They held forums in Sunnyside and Kennewick in 2014, and plan to give out more materials at obstetric and primary-care conferences next year.

In addition, county health officials have worked with the nonprofit Vitamin Angels to obtain 5,670 bottles of free folic-acid supplements for women served by the Yakima and Benton-Franklin health districts - but also the Moses Lake Community Health Center, 100 miles from the cluster region.

“I think we’ve been really responsive to the community,” Wasserman said. “We’ve been able to get out the prevention messages about the one thing we know that can prevent neural-tube defects, which is folic-acid supplementation.”

It’s not clear, however, whether health workers and their clients have gotten the message.

The 2014 Sunnyside forum, for instance, was attended by about two dozen people - and residents were outnumbered by health-care advocates and members of the media.

In March, a member of the advisory panel said community health workers in the three counties were ready to help, but had “not seen anything regarding materials around this topic,” according to meeting minutes.

In April, members of the Washington State Democratic Central Committee demanded a “more thorough” investigation in a resolution sent to the health department, saying, in part, that a folic-acid awareness effort was “not noticeable.”

In June, when Dr. Jennie McLaurin, an expert in migrant and community health, gave a talk in Yakima, she found little evidence of intervention. “The outreach workers there were unaware of any efforts,” said McLaurin, a former advisory-panel member.

And while county officials obtained some free folic-acid supplements, state Medicaid officials have been limiting coverage. Under Washington law, the state’s Apple Health Medicaid plan covers the vitamins only after a woman is pregnant - too late to prevent neural-tube disorders, including anencephaly.

Groups such as the March of Dimes raised the issue a year ago. But the state Health Care Authority, which oversees Medicaid, said last month it was considering a change only after inquiries by The Seattle Times.

“We just held her”

Steve and Valerie Branch, of Yakima, had never heard of anencephaly when an ultrasound revealed devastating problems with their unborn daughter.

The couple, who already had two young children, never thought of terminating the pregnancy.

“It was still our child. I could feel it moving,” said Valerie Branch, 33, an administrator for a group of doctors opposed to assisted suicide.

Gianna Jessie Branch was born Jan. 25, 2013. She lived five hours, long enough for family and friends to say hello - and goodbye.

State health staff interviewed Valerie Branch this year. Beyond that, however, the couple has heard nothing.

“Smoking guns” hard to find

No one disputes that it’s challenging to collect the data in a birth-defect cluster, even tougher to prove a cause, said Sever, the retired CDC birth-defects expert who lives in Seattle.

With very few exceptions, Sever said, “there are no smoking guns.”

But experts like Sever and Ashley-Koch said state officials should consider partnering with researchers already working on the problem to help contact families and gather valuable data.

“For some of our families, that’s one of the greatest comforts they get,” Ashley-Koch said. “They don’t have the luxury of having their child with them, but the fact that they participate in research makes them feel like the child’s life was meaningful.”

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