In exclusive testimony, the mother of extreme premature reports how she faced a rare disease in pregnancy and how it was when her daughter stayed in a neonatal intensive care unit.
Just over a week ago, Bebê.com.br reported the moment of the release of Rafaella Victoria , the smallest baby born in Brazil. At only 340 grams , she came into the world in March 2017 – the extreme premature of a twin pregnancy that ended in the 25th week – and left the hospital on January 24, 2018. The fact itself already thrilled, but the story that the mother, Greice Kelly do Amaral, 30, lived to reach the delivery room (and after her!) is even more impressive. Here, the bank from São Paulo reports in detail – and with exclusivity – how were the almost ten months of neonatal ICU and the excitement of finally having the children gathered at home. Check out:
“I was not planning on getting pregnant. In fact, in early 2016, I began to feel strange allergies to the body , which got worse after I started wearing a new perfume and after the period of stress that I experienced on account of my uncle’s death. The red spots spread across his arm and legs like burns, itching and aching.
I had to sleep with a cloth between my legs, otherwise it would stick skin to skin. I did a lot of exams and no doctor found out what I had. Then my arms started to hurt – it was very strong! I looked for an orthopedist, who indicated to me a treatment that required monthly injections to relieve the pain. And indeed it did relieve!
I took the first dose in August and ended up getting pregnant in September. Only then did I know that the injection cut off the contraceptive effect. I was sick, pregnant and still did not know what I had. I started the follow-up and my gynecologist asked for more exams. By now, my skin was practically raw. So much so that I did a biopsy that pointed to lupus .
I was about to turn 30. My doctor, from there, asked me to take a corticoid in small doses because I was pregnant. A few weeks after that, I discovered that the pregnancy was of twins – a boy and a girl. I was almost infarmed when I got the news because I already had a 7-year-old boy and when you already have a baby, getting started all over again is not easy. The obstetrician said, ‘Greice, one was already at risk, but now it’s worse .
Because it was a twin pregnancy, the disease progressed very fast, even with the medications. In a few days, I was gone, I hardly wiggled my arms, I felt a lot of muscle weakness and I even went to the wheelchair hospital. The doctor also did not know what was happening, but it seemed better to me to go to a hospital that was maternity, so we went to São Luiz do Itaim, where we had already decided that it would be the delivery.
There, I was examined by a rheumatologist, who saw all the exams I had done, asked for new tests, and talked to the doctor who had treated me until then. It was at this point that we discovered that, in fact, my problem was dermatomyositis, a rare autoimmune disease that has no cure (the condition causes inflammation that attacks skin and muscles).
I was hospitalized for 10 days taking medication. I was 20 weeks pregnant . I got bald, I lost eyelashes and eyebrows, I lost about 20 kilos. It took my appetite, but I had to eat because of the twins. Everything I swallowed made me choke because the problem also affected the throat muscle.
When the treatment was over I went home. I was feeling better about the disease, but I still had a hard time moving. The doctors had already made it clear that I would only get better after the children were born.
I was only 3 days out of the hospital. After that, I went for a routine ultrasound and received a new pump. Rafaella was not receiving enough nutrients for the umbilical cord and was life-threatening. The doctor gave me two options: one was to wait for her to die naturally in my belly and to continue with the Hulisces, which was going well; the other was to take the two babies out as soon as Rafaella stopped receiving oxygen and delivered to God.
And how would I sleep knowing I had a dead baby in my belly? How to choose between one and another? I did not even think twice! I told the doctor to give birth when it was needed. It was not me who would choose, but God and if it were his will they would survive. The plan, then, was for me to be hospitalized by monitoring the saturation (the amount of oxygen that Rafaella received).
I was in the hospital for a week and it was going well, so much that the doctor said I would be discharged soon and would only need to come back daily to measure her saturation. On the last day before discharge, she began to lose oxygen. The birth would have to happen! I went straight to the operating room and it went very fast.
The babies were born on March 28, 2017, in my 25th week of pregnancy . The Hulisces had an age-appropriate weight of 780 g, but Rafaella weighed 340 g and averaged 29 centimeters . And she was heavy still wrapped in the amniotic sac, as the doctors were afraid she would not survive, so her weight was even smaller than that. She had very few chances.
The two went straight to the neonatal intensive care unit and I, weakened, was hospitalized for three days. Then I was released to go back to my house in the south of São Paulo, still not walking. Since I lived far from maternity and I was in this situation, I could not go to the hospital to see the children. My husband who went every day, was late … And I still had my older boy, which my mother helped to care at this stage.
It was very difficult not to be able to visit my children. I only resumed my movements correctly more than a month after giving birth. The Hulisces was hospitalized for six months but did not have any surgery. Rafaella already gave more work, as was to be expected. She had two cardiac arrests, her arms and one leg broke and she had to put a catheter to feed because she could not swallow the milk.
During that time, I left home early, left my son at my mother’s house, and went to the hospital. I was leaving in the afternoon, to make time to get home when the van delivered my son. Then he would make dinner, help with the lesson, play … I could not help but pay attention to him too. And so it was every day.
They were nine months of ICU, always with their heads held high. Always confident, I could not give up! My children needed me, so I had to treat myself, do physical therapy while they were in the hospital. I had to be fine to take my children in their arms when they left. Only I know what I’ve been through. It is very hard to go home and not be able to take your children along .
Sometimes I would come home and cry a lot, but I always tried to do everything with a smile on my face, because I had to show that it was all right for them. And after almost 10 months of ICU, it was time to go home. Rafaella still needed oxygen and a tube in her stomach – and is with both of them until today – but the doctors chose to release her to receive assistance at home.
It’s not easy to come back, but nothing like our house, right? Today, she is a speech therapist so she can learn to swallow and physiotherapy as well. I still do my treatment – I will actually have to take medicine for the rest of my life. I have no history of the disease in the family, but now I know that many people go through life without manifesting it.
If I get pregnant again, it will happen all over again. I love my children, but it was a very painful, painful pregnancy. One thing I do not want for anyone. I am away from my job because of dermatomyositis, but recently I went through a skill and my return to work is likely to be April 4th. Even with the babies at home I will have to go back because with three children I can not afford not to work.
Now I live a racing routine, taking care of all three. One is sleeping, the two wake up, I give food to one, the other wakes, I give a bottle and so it goes … I have to reconcile. There are days I can only take a shower at midnight. But it’s worth it, because they’re at home, in their place. I may tire, but I know they are close to me. And that’s all that matters .