It’s impossible not to be happy with little two-year-old Lorena. According to her mother, the girl loves to play and walk and is “mischievous”. The mother said: “It makes us so happy, because we ask God so much for her. Her little frivolity relieves the pain I feel so much. We are so afraid of the unknown, of the future, but today she is in good health,” said the mother, entrepreneur Anna Julia Rocha, 21 years old, from Nova Friburgo (RJ).
Since her birth, Lorena (@lorenadiniz_09) has surprised doctors and parents. That’s because hours after the birth, the family received a difficult and unexpected diagnosis: microcephaly. “I heard from a doctor: ‘This kid is going to be a vegetarian, he’s going to be a kid in a wheelchair,'” Anna Julia recalls. “I ‘thrown’ an information truck at us, and it was so rough. Today, I see that they have several other ways to talk. My family tried He conveyed the news to me in such a way that it did not hurt much., but she did not have the same affection, unfortunately, ”regrets.
But Lorena exceeded expectations: she crawled at 5 months and began to walk at the age of 10. At just 1 year old, she was discharged from a physical therapist and a neurologist, and today she is leading a normal life. “For all the moms who are going through the tough times as I’ve been through, the diagnosis isn’t destiny,” she says. Check out the full interview below!
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CRESCER: Was Lorena’s pregnancy planned?
Anna Julia Rocha: The pregnancy was not planned. At the time, I was 18 and my husband, Hugo, was 21. I wanted to have children, but when I was growing up. However, she got pregnant due to an oversight. So it was pretty scary when I got a positive result, as I didn’t think I could get pregnant so easily. But we embraced that new life with all the love in the world. I soon started providing prenatal care, but my pregnancy was turbulent, in large part due to my own thrombosis. I suffered a lot, had a lot of pain, was absolutely comfortable, took a bath in bed and had an ultrasound every week.
A: When did you receive the diagnosis?
AJ: During pregnancy, even with all the ultrasounds, it was not possible to measure the small size of her head, because, according to the doctors, she was already born in the birth position. This is upside down. However, microcephaly was not an option at all. On the day of birth, as soon as she was born, they said she was too small, and they wouldn’t let me see her and ran away with her. I was desperate, I didn’t know what was going on. After about thirty minutes, they had already made several assessments of her and brought her for me to kiss, but they were already running away again. After that, it took about three hours for me to be able to hold her in my arms. So far, I haven’t seen it properly and haven’t received any explanation. The nurses only said she was “stable”. When he finally came to my lap, he stayed with me for only 10 minutes and I saw that my father and husband had been called. Then I got the news. It was as if my land had been robbed, and I could no longer feel anything inside of me, as if there was nothing left but an echo. It was very nerve-wracking. At that moment, I thought it was the end of our story. We have a very limited view of microcephaly and all the cases I knew were the worst possible: sad, painful, both for the child and for the parents. I wondered why my daughter was going through this. It was really the worst moment of my life. The word that defines the moment well is “desperate.”
C: You said you even heard she was going to be in a coma. how did you find it?
AJ: At the hospital, doctors were in and out of the room the whole time. And at one of those times a medical board came while my dad was giving me news of my microcephaly. He said: “Julia, your daughter was born with a little trouble, you need to have a lot of love and patience …”. Suddenly a doctor interrupted him and said, “Look, Dad, I don’t know what you’re saying to her, but it’s not a ‘little problem’. This is a ‘problem’.” … She will be a child who is completely dependent on her mother for the rest of her life. You can’t say it’s a ‘little problem’.” It was a totally baffling moment for me, because we never imagined we would go through this. And this doctor simply “thrown” the “information truck” at us. It was very harsh. There were several other ways to talk to me. My family tried to pass the news on to me in a way that didn’t hurt too much, but unfortunately they didn’t have the same affection.
A: How were the first days after birth?
AJ: There weren’t many cases of microcephaly in my city and Lorena hadn’t been diagnosed beforehand while she was pregnant, so it was a hospital buzz. I underwent many tests, and the health watch came to our house because, at first, they suspected I had Zika virus. I did all kinds of tests and there were a lot of people coming in and out of my house. They didn’t really respect my moment. Postpartum is really hard for any mom, it’s a mixture of feelings. So, it was a very difficult time, from the tests and feeling sad about the diagnosis. I was very afraid, not only of what you would look like, but also of prejudice and bad comments that you might hear in the future. But even though I suffered a lot, I believe very much in my heart that my daughter was a special case, that she would be fine and that this would not be her fate.
A: How was Lorena’s development?
AJ: She surprises everyone, literally every doctor she encounters. Once she was born, we were referred to a neurologist, physiotherapist, and several other specialists for follow-up. After evaluations and examinations, we expected her to reach her growth stages, but with a delay. Fortunately, she exceeded expectations: she began to crawl at the age of 5 months, and at the age of 10, she began to walk. At 1 year, I was discharged from physical therapy and neurology. Today we no longer do any treatment or follow-up other than the pediatrician who sees her every two months. Lorena’s life is normal. Her development is normal for her age or even the future. She is very energetic, smart, messy and has nothing she can’t do. She has no cerebral delay or sequelae, other than the small size of her head, which is small.
A: What are the main future challenges for Lorena?
AJ: When you have a diagnosis like this on your hand, it’s very hard to pretend that it doesn’t exist. My fear, my fear is what might happen tomorrow. Therefore, we live a lot of “today”. Everything happens differently, I’m already on the alert. As far as I know it’s a miracle, I can’t pretend that microcephaly doesn’t exist. Our challenge is to live with it, but there isn’t a day when I don’t wake up and feel some kind of fear that it has stopped developing.
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A: What would you say to other mothers with the same diagnosis?
AJ: For all the moms who go through tough times, like I did, they know a diagnosis isn’t destiny. God has given us the purest and softest thing in the world. We are given the gift of being mothers, no matter how hard it is and how guilty we feel. God does not give a greater burden than we can bear; If he chose us, it was because he saw in us the strength to face this. All I want is a lot of strength, faith and love.
It is a craniofacial asymmetry, in which the baby’s head is smaller than expected for his age. The condition leads to physical limitations and developmental delays depending on the degree of brain impairment. Some patients have seizures and become more likely to develop serious infections. There is no specific treatment. A child needs occupational therapy, speech therapists, and physical therapy to develop in the best possible way.
It is considered rare: it affects only 0.1% of live births in the world. The most common causes are congenital (during pregnancy) infections, such as syphilis, toxoplasmosis, rubella and cytomegalovirus. The Zika virus also joined this list. The use of chemicals can also cause deformation.