‘ I JUST WANT HER TO BE OK’
Mother clings to hope after baby born with Zika defects
LACEY, WASH. When her daughter was born at Providence St. Peter Hospital in January, the first thing Maria Rios checked was the baby’s head.
She’d seen the terrifying photos on the Internet — infants in Brazil and Puerto Rico whose skulls were misshapen, even collapsed, ravaged by the Zika virus that has engulfed Latin America.
Days earlier, U. S. doctors had told Rios, 20, a first- time mother, that she was infected with Zika, probably spread by a mosquito bite at her parents’ home in Colima, Mexico, last summer.
Rios desperately wanted them to be wrong.
“I saw that the babies had flat heads,” she recalled. “And they had problems eating, seeing, talking, walking. They had seizures. I was just like, ‘ Oh, God.’ ”
When Aryanna Guadalupe Sanchez-Rios arrived — 5 pounds, 10 ounces, with a cap of straight, dark hair — it was clear that Rios’ fears had been realized. The baby’s head was far smaller than normal —
“A lot of people ask for miracles. I feel like you have to ask deep from your heart.” Maria Rios, 20
27 centimeters instead of the typical 35 centimeters— a condition known as microcephaly. An early ultrasound of the baby’s brain showed extensive calcium deposits, more signs of Zika damage.
Still, Rios refused to lose hope. To her, Aryanna’s head “wasn’t really flat,” just small, she said. Eye exams showed scarring in the center of the retinas, a likely sign of vision loss caused by the virus. But Rios is certain her baby’s wide, brown eyes track light and motion.
“I just want her to be OK,” Rios said.
Despite doctors’ warnings and medical facts, the young mother remains optimistic, relying on a deep Catholic faith to build a life for her daughter.
As of May 23, Aryanna was one of 72 babies born in the USA with Zika- related birth defects. Eight pregnancy losses have been attributed to Zika infections, according to the Centers for Disease Control and Prevention.
TRACKING THE OUTBREAK Aryanna, who was born in late January, and the other infants are at the center of efforts by U. S. officials to monitor the lasting effects of the devastating outbreak, even as another dangerous mosquito season begins.
“A lot of people ask for miracles,” said Rios, who keeps a beaded bracelet with an amulet of the Blessed Virgin Mary on her daughter’s left wrist. “I feel like you have to ask deep from your heart.”
Rios was among nearly 1,900 pregnant women in the USA with laboratory evidence of possible Zika virus infections, according to the CDC. Nearly 1,600 completed their pregnancies. Of those with confirmed Zika infections, one in 10 women in at least 44 states have had a baby with brain damage or other serious defects, a recent CDC analysis showed.
Rios was tested twice for Zika and told she was free of infection. Days before Aryanna was born, a third test came back positive. “A doctor told me, ‘ You have Zika. That’s why your baby has microcephaly,’ ” Rios recalled. “She could have said it a little bit nicer.” After birth, Aryanna tested positive for the virus, too.
The news was devastating for Rios, a U. S. citizen who had been living with her husband and her parents in Colima, a city of more than 700,000 on the Pacific coast of Mexico. She returned to the USA last fall to stay with family in Lacey, 90 minutes south of Seattle.
“I said, ‘ How could that be possible?’ I didn’t have any symptoms,” Rios said. She found out that four of five people infected with the Zika virus show no signs of the disease.
Even now, she finds it hard to believe that anything’s wrong. When Aryanna wakes from a nap, sleepy and warm, Rios swaddles her in a pink, polka- dotted blanket and cradles her on the couch.
“Hi, stinky! Hi, pretty girl!” she croons, kissing Aryanna’s chubby cheek. “I look at her like a normal baby.”
Rios and Aryanna are enrolled in the U. S. Zika Pregnancy Registry, where state and local health departments track women and infants with laboratory evidence of infection.
Even in Washington, a low- risk state where the Aedes aegypti and Aedes albopictus mosquitoes that spread Zika aren’t found, 18 pregnant women have been identified with lab evidence of the virus since last year, said Hanna Oltean, an epidemiologist tracking Washington’s cases. All appear to have acquired the virus through travel, though Zika can be transmitted through sex as well.
Of those women, three have delivered babies with microcephaly, including Rios.
Hannah Tully, a pediatric neurologist at Seattle Children’s Hospital, examined Aryanna five weeks after birth and again this month. An expert in microcephaly, Tully has seen many children with the disorder, but Zika is different, she said. The damage appears to be greater than that typically found when microcephaly is caused by other conditions, including infections and premature birth. “Zika triggers this catastrophe of inflammation and cell death,” Tully said.
Scientists know that Zika, a once- obscure virus, targets and attacks neural stem cells in the developing fetal brain. Babies born with congenital Zika syndrome often have severe microcephaly, diminished brain tissue and eye damage, as well as restricted joint movement and rigid muscle tone. Recent research suggests they might suffer hearing problems and seizure disorders, such as epilepsy.
“It’s critically important that these babies be evaluated early,” said Margaret Honein, chief of the CDC’s birth defects branch. “We don’t yet know the full range of health problems these babies might have.” It’s a crucial question, Honein said. Every week, 30 to 40 cases are added to the pregnancy registry.
STAGGERING COSTS In September, Congress allocated about $ 1.1 billion in emergency funding to federal agencies for the Zika crisis. The CDC has spent about $ 300million in redirected funds and has designated about $ 394 millionmore.
The White House budget released in May proposes establishing an emergency fund to pay for responses to emerging outbreaks such as Zika. But it would cut $ 1.3 billion from the CDC and $ 838 million from the National Institute of Allergy and Infectious Diseases, where scientists work on a vaccine to prevent Zika infection.
An estimate by researchers at Yale University and the Johns Hopkins Bloomberg School of Public Health pegs medical and other expenses for a Zika-affected child at $ 4.1 million over a lifetime. CDC estimates have been as high as $ 10 million.
The thought scares Rios. Aryanna’s condition means Rios can’t return to her former job as a receptionist for a packaging firm, so she relies on family for rent, food, diapers, clothes and transportation. Rios’ sister, Jessica, 21, provided rides to medical appointments in Seattle, but her car broke down in May.
Rios gets formula from the federal Women, Infants and Children’s program, and Aryanna’s medical care is covered by Medicaid. Rios applied for Social Security disability benefits, but the process is long, and the assistance hasn’t come through.
“Where would I get $ 4 million?’ ” she said.
The worst thing about Zika, she said, is that no one, not even the doctors, can tell her what’s next. “I still have my hope,” she said. “I’m trying everything formy girl to be OK.”