For Pregnant Women in Florida's Zika Zones, Life is Full of Uncertainty

When Dr. Curry asked a routine question about exercising, the woman, once a runner, responded that she no longer worked out since her entire life had transitioned indoors. "You are going to lose your mind," Dr. Curry responded, shocked. "I said we needed a better plan: There has to be a way for you not to be an invalid."

Like many women of reproductive age in Florida, Dr. Curry's patient was struggling to adjust to the reality that Miami was declared ground zero for Zika in late July. Florida remains the only state in the U.S. with mosquito-borne Zika, and as of October 12, a total of 128 cases had been reported to the CDC. If infected with Zika, expectant mothers are at risk of giving birth to newborns with microcephaly, a defect that causes a baby's head size to be smaller than normal, as well as other serious brain abnormalities—which has resulted in extreme anxiety and uncertainty for many women of reproductive age in the state.

Some pregnant women have effectively gone into seclusion, seldom leaving the house to avoid mosquito bites. Others have simply thrown in the towel: Some couples expecting babies, or trying to conceive, have fled their neighborhood, the Miami area, or the state of Florida altogether.

Jessica Ardente, an upbeat 36-year-old nurse practitioner, had to shift her priorities and rethink her daily routine when she learned she was pregnant with her first son. She lives in Wynwood, the city's first "Zika zone." (Wynwood has since been declared Zika-free, but other neighborhoods in Miami-Dade county remain transmission zones.) For weeks, Ardente avoided her regular coffee joint, eschewed dinner at neighborhood haunts, and wore pants and long sleeves in the oppressive summer heat when she walked her dog.

Her lifestyle changes, as it turned out, were comparatively minor—she later realized that three or four expecting couples in her apartment complex had left and taken short-term leases outside the area.

Of course, not everybody has the means or ability to evacuate the tropics, and it is not an option that Dr. Curry will recommend. "I've seen some patients who can't afford to eat then other patients who say, 'I am relocating to another state, barely disrupting my life, because I want to have zero risk of Zika,'" she said. "I don't ever want a woman who doesn't have the ability to quit her job to feel like she is being a bad mother because she is staying."

But so much remains a mystery. We don't how likely it is someone will get infected by a Zika-carrying mosquito, or why some people get sick and others don't. We don't know how many of those infected are vulnerable to Guillain-Barré syndrome. We don't know what the probability is of a Zika-infected mother delivering a baby with birth defects. Since each study on the subject uses different methods, the likelihood ranges from one to 30 percent, depending on what you read. (Dr. Curry says she tries to find the paper or article that best matches her patient's situation, but there is no firm statistic.)

All of this makes the virus particularly difficult to handle from a public health perspective. There is a steep learning curve for researchers, since 80 percent of people who contract the virus won't show symptoms and thus are unlikely to seek medical attention, and because Zika does most of its damage during pregnancy. "The whole epidemic has a molasses feel to it because pregnancy unfolds over the better part of a year," Dr. Curry told me. "And you don't necessarily know all the things you're looking for."

For months, the medical community focused on microcephaly, which is usually apparent at the time of birth. However, reports of newborns without microcephaly but with abnormal results on neurologic exams surfaced, indicating Zika can cause a wider scope of developmental problems than initially understood. "In December, we were like, 'The head circumference is normal, good luck!'" says Dr. Curry. "Now we're learning that the head circumference may be normal, but if we didn't do ultrasounds or didn't follow these kids developmentally, maybe we're missing a lot of things."

One of the most frustrating aspects of the virus is testing for it: It's a ridiculously cumbersome and not completely accurate process. There isn't one simple blood or urine test that can confirm a Zika diagnosis.

Imagine you're living in South Beach and one afternoon you instinctively scratch your ankle. You have a mosquito bite, maybe a few bites, and you eventually get tested for Zika even though you feel fine. Your first test would be a polymerase chain reaction (PCR), a molecular test that detects whether the virus is in your system. If you test positive, that's it—you have Zika. However, a negative result on the PCR doesn't necessarily mean you're Zika-free; it just means you don't have an active infection. If your PCR comes back negative, you need to take another test, an antibody test called an IgM, which shows if you've had the virus in the past 12 weeks. If that second test is negative, you're out of the woods—no Zika. However, if that test comes back positive, your samples then get sent out to the CDC for an even more specialized antibody test that confirms whether the presumed positive is in fact Zika and not, say, dengue fever.

In August, Governor Scott ordered free Zika testing at state laboratories for all pregnant women, which has enabled many low-income and uninsured women to obtain life-changing information. Getting the results, however, hasn't been so simple: Over 3000 women have taken advantage of the service, resulting in a significant backlog, as physicians and test facilities struggle to keep up with the demand. Patients and doctors alike have reported significant delays for women anxious to know whether they have a virus that can cause devastating harm to their baby.

Last month, Sammy Mack, a pregnant health reporter at WLRN in Miami, wrote an article documenting her frustrations with the Zika test backlog and the Florida Department of Health. For Mack—who ultimately tested negative for Zika—a process that was supposed to take seven to ten business days ended up taking five weeks. (When reached for comment, a Florida Department of Health spokesperson told Broadly that their public health labs typically take one to two weeks to test a sample and get results to the health care provider who ordered the test.)

The problem with the delays—with making patients like Mack wait five weeks to receive their results—is that being forced to wait can complicate a woman's already difficult decision about whether to continue a pregnancy if she fears she's been exposed to Zika. In the first trimester, it's usually impossible to tell if the virus has caused any problems with the fetus. In the second trimester, at about 18 to 20 weeks, Dr. Curry performs an anatomy ultrasound that can sometimes indicate ahead of delivery that a baby might have complex health problems—but not everything can be seen or diagnosed while the baby is still in utero. In addition, there can be changes in the brain that happen after birth that can't even be detected at the time of delivery.

According to Mack's article, doctors may need to change the way they screen newborns whose mothers are still waiting on their Zika test results—possibly performing blood and urine tests, or even a spinal tap, to ensure that the infant doesn't have the virus.

"The image of my tiny newborn getting poked and tapped because my test results aren't done yet?" Mack demands. "This is where I start to get nervous. And angry."

Whenever Dr. Curry diagnoses a pregnant patient with Zika, she presents abortion as one of their legal options. (Some women don't even realize it's a potential course of action until Dr. Curry informs them of it.) But "legally accessible," says Dr. Curry, is not the same thing as affordable and actually accessible. "If someone chose to end a pregnancy at 23 weeks and was uninsured, I am not sure there is a lot of logistical support for that woman to do so."

Right now, there are three providers within the United States where you can end a third-trimester pregnancy, and Dr. Curry and her colleagues will lay that option in front of the patient if necessary. One of Dr. Curry's patients discovered she had the virus at week 25 and asked about her options. "We provided her with one of the phone numbers," Dr. Curry said. "She reflected on her financial situation and the financial burden that would be the logistics of a third trimester abortion and didn't even pursue with the phone call."

The best recourse for many Florida women, for now, is to remain as careful as possible and hope for the best. Jessica Ardente is currently Zika-free and in her 26th week of pregnancy. In late October, she'll take her third and final Zika test. Though she tries to avoid transmission zones like Miami Beach, she says she refuses to let mosquitos dictate her life. "I'm not going to change my life because of the virus," she said. "That's how I deal with it right now."