What It's Like to Be Pregnant With Zika
After Zika exploded into an epidemic in Puerto Rico early last year, U.S. lawmakers fought for nine months about funding to stop the spread of the virus. At the center of the battle: a proposal that targeted Planned Parenthood and denied its clinics on the cash-strapped island from receiving any money to address the crisis. But pregnancies and babies don't wait for politicians. As Washington emptied out for summer vacation without an agreement, 34-year-old Adriana visited her doctor in San Juan to confirm what a home test had already told her. She was pregnant. Again. All of Adriana’s previous pregnancies ended in miscarriage, but she and her husband remained hopeful about having a child. But during her first trimester, she found out she had been infected by Zika, which could cause devastating birth defects.
According to health officials, as of July, Zika was infecting up to 50 pregnant women a day in Puerto Rico and accumulating a growing list of potential birth defects - microcephaly, seizures, facial abnormalities, feeding and vision problems. There is no doubt that politicians played fast and loose with women’s and children’s health on the island over the past year. And with Donald Trump as incoming president, there’s no certainty in the future. Trump has spoken out vehemently against women’s reproductive health rights, threatened access to abortion, and denied climate change, a factor increasingly connected to human health and infectious diseases – especially mosquito-borne diseases like Zika.
Last year, I traveled to Puerto Rico with photojournalist Ed Kashi and health expert Mildred Rivera to begin filming a documentary that connects the dots between climate change and women’s health. When we met in San Juan, Adriana was three months pregnant, and she didn’t know what her diagnosis would mean for her and for her baby. She did know that she would have to make a choice between continuing her pregnancy or having an abortion - and that a fully informed decision would be impossible. She asked me to use a pseudonym due to the stigma around abortion, as she did not want her friends and family to know she was considering the procedure.
I’ve been trying to get pregnant for four years. Every year for three years - 2013, 2014, 2015 - I had miscarriages. This year, I wanted to try again. It was right in the middle of the Zika scare and the government was telling women not to get pregnant. Of course, no one ever mentions anything to the men. I didn’t realize I was doing this alone!
When the government said, “Don’t get pregnant because of Zika,” we kept trying anyway. My husband and I weren’t thinking about the government. We were thinking about us. All we were focused on was how much we wanted to start a family and trying to put an end to the intense sadness we were feeling.
Of course, I was happy when I got pregnant again. But I was also nervous.
About five weeks in, I had a rash, headache. My hands were aching. I thought, Is this my body’s version of morning sickness? When my doctor told me I had to be tested for Zika, I didn’t think too much about it. Every pregnant woman is being tested in the first and second trimesters. This is the way it is now in Puerto Rico. We’re used to mosquito diseases here - and compared to dengue, which can kill you, a little rash and headache from Zika didn’t seem like much to worry about.
My biggest concern was miscarrying again. All of my miscarriages happened before eight weeks, and I just kept thinking, Make it to eight weeks, make it to eight weeks, make it to eight weeks. When I did, it felt like entering some magical land. For the first time, I was feeling hopeful.
Then, at nine weeks - the longest I’d ever carried a baby - I got the news. Zika. I tested positive for Zika. When you ask what that means, they terrorize you with the answer: My symptoms might be mild, but what the virus can do to my baby … the birth defects it can cause…
I told my mom and she was hysterical. She said, “Why is this happening to you?” I said, “I don’t know, Mommy.”
I’m not sure if anyone is aware of the mental health issues raised for a pregnant woman worried about having a healthy baby. Sometimes I can’t think straight. I was thinking about this constantly, waking up at 2 in the morning crying. I cried so much. The message is out there, “My baby is coming with birth defects.”
My doctor told me again and again, “Have faith. Just have faith.” I couldn’t believe it. Faith? Stop talking to me about faith! Talk to me about science.
I’m a social worker and just today, I had to tell someone she has AIDS. Zika is like HIV was in the ‘80s; there are so many questions and so few answers. That’s really scary.
I was desperate for answers. The government tells people to avoid Zika by staying in air conditioning, keeping screens on the windows, and reapplying repellant every three to four hours. I have A/C. I have screens in my windows. I have OFF in my purse. But I got it anyway.
When you have it, they just tell you the bad news and refer you to a specialist. That’s it. When I got to the specialist, they didn’t want to see me. They said, “Come back when you’re 18 weeks. Then we can see if there’s something wrong with the baby’s head.” They were totally focused on microcephaly, which is like the most extreme problem a baby [exposed to Zika] can have. I’d been reading about lots of other neurological problems that can happen, and I refused to leave until someone would talk to me. Finally, the sonogram nurse came out, and we just stood in the hallway and talked.
She told me about what happened in Brazil. How so many babies exposed to Zika were being born with microcephaly. She said that it wasn’t just Zika that caused microcephaly cases there but dual exposure - exposure to Zika and to the pesticide to control the mosquitoes that carry Zika. How ironic and terrible is that?
My mom lives in Florida. She’s getting married next month, and I can’t go because I can’t travel to places where pesticides are being sprayed to stop Zika. In Fort Lauderdale, they’re spraying with pesticides, and I can’t risk that dual exposure.
[Editor’s note: Pyriproxyfen is the insecticide that was sprayed and added to drinking water in Brazil, and studies linking it to microcephaly have since been refuted by other scientists - most compellingly because three cities at the epicenter of the Brazilian Zika/microcephaly crisis were not using the insecticide at all. Naled - banned by the European Union - is the insecticide sprayed in Florida. When the CDC recommended spraying Naled in Puerto Rico, widespread protests about its toxicity broke out and shut the program down. The organic larvicide Bti was used in Puerto Rico instead.]
My husband and I have had the abortion conversation. I’ve spoken with someone who can perform it, and after that conversation, I knew I needed to clear my mind. I had to make a choice and be firm in my choice. Could I live with my decision? I’ve been thinking about terminating early because Zika is a risk no matter what and the longer I wait, the harder the decision becomes. But could I live with the idea of terminating at 12 weeks just having a Zika diagnosis and not knowing if my baby has any birth defects? Or could I better accept the consequences of the decision if I waited until week 18, so that my decision would be based on more certainty?
My husband keeps telling me, “I just want you to be OK.”
The bottom line is it’s a risk to keep a baby with a Zika diagnosis. But something the sonogram nurse said stuck with me, “If it is a desired baby, wait.”
Today, when I gave that woman the HIV diagnosis, I didn’t just say, “Hey you’re positive, here’s a referral.” I gave her information about what to expect every step of the way and talked to her about how to access other support services. For Zika, there is no guidance. There is no support. So, I tried to build my own support network. I met with three therapists and that made a huge difference for me. It was like a light went off in this very dark place. And I did a #zika search on Facebook for pregnant women in Puerto Rico. I wanted to find someone like me - someone in her first trimester positive for Zika - who I could share my feelings and experiences with. That’s how I met Leslie. I’m so grateful to have her in my life - to be able to talk with her, cry with her.
Leslie and I are dealing with the exact same thing. But we’re making different decisions. I’ve decided that if there’s a problem, I am not going to continue the pregnancy. She told me that she’s going to keep her baby no matter what. I respect her decision and I understand it. It’s just not the decision for me.
If I terminate, I know it’s huge physically and emotionally. But I also know that stress can impact babies too. This is something mothers are thinking about. If you’re stressed out, it’s not good for your baby.
Now, what do I do while I wait? I’m trying to control what I can control. I eat well. I get enough sleep. I avoid negative thinking. I’m trying to advocate for myself and I decided I could advocate for others.
It began with my doctor telling me to wear condoms. What he meant was that my husband should wear condoms! Because Zika can also be spread through sex - from a man to a woman or a woman to man. If I got Zika from a mosquito, I don’t want to pass it to him. Of course, it’s possible he passed it to me. So, my doctor tells me - and probably lots of other women - to wear condoms. But guess what? There were no condoms in his office! So, I brought in lots of condoms and put them in the bathroom. Condoms in a jar at the registration desk aren’t very effective because people will really only take condoms in private.
The more I’ve analyzed my situation with Zika, the more I compare it to HIV. Eventually, drugs were developed to keep HIV from spreading from mothers to babies. But there’s nothing like that yet for Zika. We are living in the unknown. There’s nothing I want more than to have a baby and start a family. I hope I can go forward, but even if I can, and everything seems fine at birth, doctors will be studying the baby for three years. And who knows - maybe three years will turn into five or 15. Because even doctors don’t really know what to expect.
This is what pregnancy is like with Zika.
Postscript from Adriana in her seventh month of pregnancy: "I have good news! The doctor told me the baby doesn’t have any signs of Zika - no signs of microcephaly. I know what’s being said about possibilities for long-term problems, but I’m thinking about the positive things. I’m feeling very calm and very happy. Very, very happy."
Beth Murphy is the director of films at The GroundTruth Project and founder of Principle Pictures. She is directing and producing a series of films with GroundTruth film fellows focused on the impact of climate change on women and children as part of the global journalism project “Living Proof: The Human Toll of Climate Change.”
Follow Beth on Twitter.
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