Babies with microcephaly: “It was scary to see the size of the little head”

“I am the mother of an 11-year-old girl and I have always dreamed of having a boy. I got pregnant and, close to the fourth month, I went for a morphological ultrasound to find out the sex. I felt a mixture of joy and sadness. He was a boy, but the doctor said he had a malformation on his head. It was a thud. I got home and told my husband, who didn’t believe him – he said that, as the medicine was advanced and the baby was moving a lot, everything would be fine. In the seventh month, I had another exam, and the doctor confirmed that the head was not evolving like the body. I went into despair, I didn’t know anything about microcephaly. Before pregnancy, my husband and I were fine, there were two years together. But, as I questioned what the future would be like for someone with this malformation, we started to get a little uncomfortable. He dodged, he couldn’t see what was happening. For me, researching was the best way to deal with what to expect when the baby arrived. I kept trying to figure out the causes of it and remembered that, from the third to the fourth month, I had a fever and spots on my body, the symptoms of zika. I live in the Apipucos neighborhood, and there are a lot of mosquitoes here. On the side of my house, there is an open area with garbage, bottles, a lot of standing water. And the nearby Capibaribe River is polluted. My son was born with a head circumference of 26 centimeters, very small. The minimum size for normal babies is 32. It was scary to see the size of the little head – for my husband even more so. He got emotional and said he was also scared: ‘Will he be able to react?’, he asked me. I felt a mixture of joy for the birth and fear of what was to come. At 3 months, the baby underwent an examination that confirmed the zika infection. He gets irritated and cries very often. With my other daughter it was different. At this stage, she had already become accustomed to the environment. When he wakes up, he already starts screaming. Then, about 15 minutes pass calmly, and then the crying comes back for about 20 minutes, half an hour. The problem is not knowing why. It starts and stops out of nowhere. It’s not hunger, it’s not pain, we don’t know why. The doctor says that the tomography shows calcifications in the brain, which can make the irritability much greater. If I give paracetamol, it gets better, but since it’s a medicine, I don’t use it directly, only as a last resort. When he was 1 month and 5 days old, my husband left the house saying he didn’t understand that cry. He was unemployed, requiring attention, and I wasn’t able to give it. Now he comes, spends some time at home, but we don’t live together anymore. I need his company, but this situation caused many fights. Today we have a much better relationship than when he left. In the last month, he managed to participate a little more, he said he is more aware of what is happening. He is watching the baby’s evolution, coming to appointments with me. He accompanied me to a meeting of mothers of children with microcephaly, the União de Mães de Anjos, and he felt more comfortable because he saw that it’s not just us. This is the last month of my maternity leave. I still don’t know how I’m going to get back to work. My daughter and mother help me. The entire neighborhood also mobilizes. I live in a community, with a brick house glued to another. Because of the heat, I spend more time outside. So everyone sees his irritation, realizes that it tires us out. I can’t rest because he wakes up every three hours, and then it takes me an hour and a half to get him back to sleep. I never thought about having an abortion. One of the prenatal doctors, when she noticed the malformation, said to me: ‘Don’t create too much affection because he could be born and die’. How am I going to say ‘my baby was born’ and not create affection? As long as I’m alive, I’ll be by his side.”

Daniela Santos, 29 years old, receptionist, from Recife

“I found out I was pregnant in September, when they were starting to talk about Zika. The link between the virus and microcephaly was still just speculation. I didn’t even think about it when I broke the news to my mother, but she was more informed and alerted me to the dangers of the disease, especially in pregnant women. I suspected it was exaggeration, overprotection. However, in a matter of days, the number of cases grew a lot. It was no longer a concern only in the Northeast, the stories were already appearing everywhere. I went to several doctors to ask what their recommendation was, but no one had a definite answer for me. Finally, I decided that the more prevention, the better. I have a cousin who lives in Italy and could receive me; I work as a freelancer, so I could do some things remotely. There was no time to program myself, because the pressure was getting bigger and bigger. I bought a ticket at the last minute and left on Christmas Eve. A month before boarding, my sister found out that she was also pregnant, but she chose to stay. The plan was to come back in two months, when I would be 25 weeks. At first, they said that, at that moment, mother and baby were more fragile and susceptible. Today, there are already those who question this information. I left my boyfriend here. He was unable to closely monitor the pregnancy at that time, but he was one of the main supporters of the trip. The important thing was to take care of our daughter’s health. I took out health insurance and paid for a doctor’s appointment because I wasn’t getting prenatal care. I even missed the date for a morphological ultrasound, which was very expensive there. When the deadline came and the money ran out, I returned. I’m afraid, yes. I use repellent many times a day and only wear pants. At home, a ground floor apartment with a garden, we put screens on the windows and no longer use the backyard. What is frightening is the lack of control we have over this: it is no use just for me to take care of myself if my neighbor does not do the prevention too.”

Fernanda Metidieri, 31 years old, Advertiser, from São Paulo

“I hadn’t thought about the possibility of going to another country until Fernanda left. When I found out she was pregnant in November, Zika seemed like a long way off. Over time, closer cases appeared. I weighed the pros and cons: I wanted to live this moment close to my husband and my family, in addition to insisting on my doctor’s follow-up. And even if I were, I would still be exposed to a number of other diseases that are also harmful to the baby, such as toxoplasmosis. Other than that, I didn’t want to leave my job. I decided to stay, but deep down I was thinking about the consequences of my choice. What if I got Zika? I redoubled my care. Today, at 25 weeks, I use a stronger repellent, which is hard to find. I don’t leave the house in sandals, a skirt or a short-sleeved blouse. I took vitamin B to boost immunity and lower the risk of getting any viruses. I carry insecticide spray in my purse. If I see a mosquito, I start spraying it, even if I’m in someone else’s house. You can’t relax.”

Maria Luiza Metidieri, 33 years old, marketing coordinator, from São Paulo

“My husband and I started the treatment to get pregnant in November 2015, after more than a year of trying without success. The insemination process is simple: the doctor collects sperm, makes a selection of the strongest and injects them into the uterine cavity. From then on, everything continues naturally. Our first attempt was on the 15th of January. I was very excited and rooting for it to work out. However, two weeks later, the test came back negative. We were really sad, but we knew we could give it another try. I even considered going straight to fertilization (which is when you fertilize the egg in vitro and then implant it in the mother), but my doctor calmed me down and said that we should consider another insemination first. Two days after that news, while I was still recovering, I noticed some spots on my body and felt unwell. He also had a fever. The next day, the symptoms got worse. I went to the hospital and the diagnosis was zika. The exam that confirmed the presence of the virus would not come out for another 15 days, but I fulfilled all the descriptions: headaches, joint pains, conjunctivitis, fevers, temperatures and red spots. At that time, I thought, ‘I’m glad I’m not pregnant’. I work in neonatal and infant intensive care centers. I see firsthand the consequences of zika in babies. It’s not just microcephaly, but other neurological sequelae. Furthermore, the families of these children are lost, they don’t have any support, they don’t even know what the future will hold. We need, as a society, to think about the support we can offer mothers and little ones. I’ve already done two tests to find out if the virus had left my body – in the last one it wasn’t present – ​​and I’m waiting for the serology result to see if I created the antibody. What if he manifests again later on? How long can it affect the baby? I want to be a mother, but until I’m completely calm about it, I don’t think about trying to get pregnant again. They say that anyone who has had the disease once is immune to it, but there is no research to prove it. I hope that soon we will have some certainty or at least more information.”

Julia Guimarães, 36 years old, pediatrician, from Rio de Janeiro

Testimonies to Luara Calvi Anic and Isabella D’Ercole