The moving story of Luiza, one of the smallest babies ever born

My pregnancy was wanted and planned. I dreamed of doing the classic belly-baring photo shoots, having a baby shower and feeling the baby kick and move inside me. But I couldn’t live through any of that. My daughter, Luiza, was born when I was just over 5 and a half months pregnant, in the 25th week of pregnancy.

On the morning of July 3, 2018, I freaked out when I looked in the mirror. With my face, hands and feet extremely swollen, I barely recognized myself. I remembered that the previous weekend at my dad’s birthday party, guests who hadn’t seen me in a while had commented on my swelling. I didn’t care much because, for me, it was a normal symptom of any pregnancy. After all, I had been getting prenatal care regularly and there was nothing wrong with it.

But, as I was also surprised by the size of the swelling that day, I decided to go to the hospital to see if everything was really okay. As my husband (Igor Batista da Silva, 31 years old, expedition analyst) was working and I had no idea it would be something so serious, my parents accompanied me. We spent the day in the emergency room doing various tests. During the ultrasound, the doctors realized that I had lost practically all of the placental fluid and warned me that, from that moment on, I was considered a high-risk pregnant woman. They recommended my transfer to a specialized maternity hospital.

By this time, I had already called Igor. He and my mother went with me to the maternity ward. It was past 7 pm. Service was pretty quick. They took my blood pressure – it was over 20 when normal is around 12. The nurses took it again and again in an attempt to confirm. They wouldn’t even let me see the values ​​to avoid making me even more nervous.

The doctor was adamant. “You had eclampsia (high blood pressure in pregnancy), lost all amniotic fluid and the baby is in fetal distress. The only solution is to deliver immediately. The problem is, we probably won’t be able to save both of them. So you have to choose between the mother’s life and the baby’s life. We, the medical team, prioritize the mother. You are young and could get pregnant again. The chances of survival of the baby, so premature, are around 10%, not to mention that it is very likely to have many sequelae”, he said. He then advised that he would leave us alone to think for a few minutes, since, given the risk, there wasn’t much time.

Our world collapsed. Igor and I were alone in that room and we had five minutes to decide between my life and Luiza’s. Desperate, we cry, pray, ask God for help. It was a moment of great anguish. How to choose who had the right to live? After many tears, we agreed with the doctor and chose to preserve my life. We warned my mother, who was waiting for us at the reception, that the only solution would be to terminate the pregnancy. She called some family members, giving little hope for Luiza’s life. But still, I never stopped believing that my daughter would survive.

Around 8 pm, I was taken to an observation room, where I started to be monitored. The medical team expected me to go into labor naturally – the that would be less risky for memy health. As it didn’t happen, they induced labor, but I didn’t have contractions. We spent the whole morning waiting for Luiza to be born, and nothing. Igor spent the whole night on an uncomfortable stool holding hands with me. I no longer had hope that Luiza would be born alive. We began to prepare ourselves to accept the fact – we would have to face our daughter’s wake. When it was 6 am the next day, they decided it was better for me to go to the operating room. Couldn’t wait any longer.

At 6:52 am on the 4th of July, our miracle, Luiza Vitória, was born. At 27 centimeters, weighing only 328 grams, pale, with a very low heart rate, she was immediately revived by the pediatrician. Soon I heard it as if it were two meows. It was Luiza, weak, showing that she was there, alive, and that she wanted to keep living. That filled us with hope, faith and fear of what would come ahead.

They wouldn’t let me see her. She was quickly moved to the NICU incubator. As I was also at risk, I had to be transferred to a hospital with an adult ICU. The eclampsia had progressed to Hellp syndrome, a rare and serious complication of pregnancy, which has, among other consequences, a low platelet count. There is no known cause for the syndrome. Basically, it consists of a poor adaptation of the body to pregnancy, activating immune factors and causing vascular changes. I was hospitalized for five days in the ICU and for three more in the room.

It was eight long days away from Luiza. I only saw my daughter through the photos and videos that my husband sent. My heart broke with every image of our little warrior, all intubated in that incubator. In the videos, Igor showed that when he talked to Luiza, she moved. It was very exciting. She wanted to get out of that hospital as soon as possible. My daughter needed me; and I hers. I imagined that being so small, so fragile, struggling day by day to survive. It wasn’t fair to stop fighting for Luiza. As soon as I was discharged, I rushed to the neonatal ICU of the maternity hospital where she was.

When I saw her for the first time and in that situation, my legs wobbled. I couldn’t pick her up yet because of the risk of infection. We could only touch her little body through the holes in the incubator. From then on, I spent day and night beside her, singing and telling stories. I also did the milking so that they could breastfeed her with breast milk. With every gram of weight she gained, we celebrated – it was a victory. Every time the diet increased by 1 milliliter, it was like we won a World Cup.

With 21 days of life, weighing about half a kilo, Luiza Vitória underwent heart surgery to correct a valve that had not developed. She responded faster than expected. When she completed 30 days, the doctor let her hold our little one in our arms using the kangaroo method, in which the baby’s chest is glued to the mother’s or father’s chest. It was the best time of my life. Finally, I could smell her, her heart beating, snuggle her in my arms. I stayed with Luiza on my lap from 4 pm to 7 pm. I didn’t want to let go of her anymore.

A few days later, we got scared. Luiza got an infection and had to receive antibiotics for ten days. Then, another scare: the tube that kept her breathing clogged and the saturation reached 10, when normal is between 93 and 100. Our little one had to be revived by the team. Another miracle in her life.

In all, Luiza Vitória spent 75 days intubated and there were severalextubation measures. She received six blood transfusions and one platelet. Thus, we lived days and nights inside that ICU, seeing other mothers and fathers going through the same despair as us, many babies leaving, others arriving. And Luiza Vitória there, firm and strong, fighting for her life.

On October 5th, at 3 months old, my daughter took her first bath. Until then, baths were in the bed. She loved! It was lovely to see her happy little face as she played with the water. On October 10th, I was able to put her on the breast to breastfeed. I can’t even explain the emotion I felt. What a joy to know that I still had enough milk for her to suckle. And she took the breast and learned to suck quickly, surprising everyone. Day after day, she breastfed more and more and gained weight.

After 127 days in the ICU, we received the long-awaited discharge and were able to take our warrior home. With almost 5 months, Luiza measured 42 centimeters, weighed 2 kilos and was absolutely healthy. The neurological ultrasound did not show any changes. That baby, born extremely premature, at 25 weeks of gestation, weighing only 328 grams – less than a pot of margarine – was alive. She was later diagnosed with chronic non-progressive encephalopathy (cerebral palsy).

She is certainly one of the smallest babies born alive in Brazil and in the world*, she leads a normal life. She was admitted the year before last quickly to treat a vision problem, which is in remission. In the morning, she has physical therapy, hydrotherapy and occupational therapy, which can only be done thanks to the financial support of friends and family. The agreement does not cover any of the procedures. Strabismus is treated with the use of the patch, 6 hours a day in each eye. In addition, she has stiffness in all four members: arms and legs, but the left side is even more compromised, but, according to the team that takes care of her, she has everything to evolve well, as long as she continues with the exercises.

Close to turning two years old, she still can’t walk, but she has the size and ease equivalent to that of a 10-month-old baby. She is starting to learn to stand on her own and is practicing the all fours position for crawling. Today she measures 70 centimeters and weighs almost 8 kilos – which is considered great for her corrected age, which would be 1 year and 6 months now, if she had been born on the correct date. Doctors claim that up to 2 years old she will reach the normal development of a child. Everyone is amazed at how quickly she has evolved. Progress should be intensified with her entry into school, as she begins to interact with other children. Guidance came from the professionals who accompany her, such as the neurologist, pediatrician and therapists.

Luiza Vitória came into the world to teach us a lesson. I didn’t have a big belly to take a picture of and I never will, because if I get pregnant again, there’s a risk of facing the same problem. But God knows best. If I didn’t go through it, it’s because it wasn’t meant to be. more important than a pregnant photo album is having my greatest miracle, Luiza, in my arms every day.”

*The Ministry of Health reports that it does not know the smallest baby born in Brazil because it does not compute data on babies born weighing less than 500 grams or weighing more than 4 kilograms. The Oswaldo Cruz Foundation, a reference in the care of extremely premature infants, reported that the smallest baby attended last year was born at 27 weeks, weighing 410 grams.

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