Discovering a pregnancy during the year 2020 was a whirlwind of emotions. While hope was knocking at the door with new life on the way, fear was also present and not by chance. Although, so far, studies indicate little possibility of vertical transmission of covid-19, we experience more dangerous facets of the disease and with the awareness that pregnant women are part of the coronavirus risk group.
It was in this challenging scenario that the writer and photographer Pâmela Galvão, 35, gave birth to Melissa. On March 9, the little girl arrived in the world bringing joy to her parents who were anxiously awaiting her. But also the painful reality of having to be referred to the Neonatal ICU for having Down’s Syndrome, a genetic condition that tends to lead to other comorbidities. In Mel’s case, it is a heart problem that will require surgery four months from now.
Still waiting for the newborn to be discharged and able to go home for the first time, Pâmela told how it went from the discovery of the firstborn’s pregnancy to the pain of seeing her daughter in the Neonatal ICU in the middle of a pandemic. “It’s nine o’clock in the morning and leaving ten at night, all the time scared: of a diagnosis, of an exam result and of being contaminated by the covid-19”, says the mother.
See her account in full:
“I have been with my husband for 20 years and it was a very planned pregnancy. From the moment we decided to have a child, I started to make a table and, shortly after two months, I discovered that I was pregnant.
What made me suspicious was that I started to feel very sleepy and I have a lot of insomnia. So, I did a pharmacy test and he was positive. The first person I told was my mother, and I took the test again to tell my husband, because we found the process very fast.
When I told him, as we were in this pandemic moment, I wanted to surprise him and I produced a video. His reaction was super cool, because he also didn’t believe it and even asked me to do the blood test to really believe it. After all, we had spent so much time together and it had never happened ”.
The beginning of the Down Syndrome diagnosis
“With the development of pregnancy, an alteration in the nuchal translucency (measured from the region of the neck of the fetus) has already been detected in the first morphological ultrasound, at three months. I received this diagnosis alone, since with the pandemic, I could not enter with a companion. I was very scared when the doctor raised the possibility, but he said it was not yet a diagnostic test. It was to go deeper.
From there, we started to do other tests and the doctor ordered a blood test that said she had a 50% chance of having Down Syndrome and a 50% chance of not having it. Still, all the tests that we did only showed that it could be something. That’s why we changed doctors and, with this new gynecologist, he asked for amniocentesis ”.
To take or not to take the exam?
“Aminiocentesis is a very aggressive test, in which the doctor talked to us and I even had to sign a term of responsibility so that we were aware that we were at risk of miscarriage. But the specialist said it was a minimum percentage and advised to do it, even to understand the case of Mel.
I decided to do it exactly because it was more difficult to live with the doubt than with the certainty that it had, because it eroded me and I didn’t know which way to go. So, I thanked God a lot for discovering Down’s Syndrome during pregnancy, because I I was prepared for this moment that I am living today and I was able to prepare people close to me ”.
The difficult conversation between the couple
“We go through all the processes: from despair, fear, denial, questioning… Until we reach understanding and acceptance. But he was very quick, as painful as it was. We accepted things as they were and talked a lot about the possibility of being positive in this exam and what we would do from there.
We read and were well informed that people, even outside the country and legally, abort children with Down Syndrome. I was very afraid that it would go through my husband’s mind and he would go through mine.
When he opened the aminiocentesis result and read it, he was unable to give me the news. He kept rolling, rolling and when he spoke to me, I looked at him and said: ‘I want to continue with this pregnancy. Is that you?’. He replied that he also wanted to, that there was no possibility for us to think of anything different. That was when my heart calmed down. We were thinking the same way.
We also learned that up to 80% of couples split up in this process, because either the mother gives up and the father stays with the child or vice versa. So, in addition to Down Syndrome, we were afraid it would affect our relationship. From the moment that we were sure that everything would be fine between us, my concern turned to another: is she in good health? ”.
The relief of good news
“I was in the process of being accepted, but I was very afraid. Therefore, we looked for a fetal specialist who did the exams to see all of Mel’s organs, since Down’s Syndrome causes several other malformations. So, my fear started to be that there was something that was not right, because in one of the exams I had already pointed out that she had something in her heart.
When the doctor said that Melissa’s prognosis was very good, that’s when I breathed and thought: thank God, it’s just Down’s Syndrome. That was when I felt my acceptance. Because the important thing for me is that she is fine, and the condition was just something else. That we are going to need to work, that we are both going to have to encourage her a lot, but that was no longer a problem. That was when everything changed.
We started to show people close to us and family who Melissa was, what the Syndrome was and they were able to go through this process as well. And it was very challenging, because many questioned, said that they would not be able to do it if they were in my place.
There were a lot of questions, but I realized that people just wanted to understand, because it is a little talked about subject. I knew that it had been difficult for me and that it would be difficult for those close to me at the time ”.
“Even during pregnancy, the doctor had already prepared us that, as soon as Mel was born, she would probably have to stay in the Neonatal ICU for two days because of her heart. That’s because the problem she has ends up causing the organ to send a lot of blood to the lung and that makes her very tired. They even say that the popular name is ‘soggy heart’.
Since then, we have been working on this idea all the time. Only when I got here, the scenario was different. Mel was expected to be born at the end of March and then she moved to the 17th. Only on the 9th, I started not to feel her moving anymore and I went into despair. So, my doctor asked me to come to São Paulo, since I am living in the countryside at this time of pandemic.
When I arrived, I did the exams and he said that the results were worrying. I asked why, since I saw that the heart was OK, but she had zero movement. I was asked to repeat the exam. I ate, I remade, and she moved a little more, only it was still serious. It was then when the doctor said: ‘your delivery is going to be tomorrow’. Wow! We were not expecting this.
Only he explained that she had already completed 37 weeks and, therefore, had left the stage of prematurity. It was already formed. I didn’t have to hold back any longer, since postponing her birth after this lack of movement could give us another scare and we have to operate in an emergency ”.
After delivery …
“It was too difficult to enter the Neonatal ICU. Seeing my daughter in the incubator, needing a respirator, feeding by tube, looking to the side and seeing so many other children with Down’s Syndrome or premature babies.
It is also desperate to see here what we only saw in the newspaper, with a crowded ICU, strange movement in the hospital … All the time you hear someone coming in with suspicion or someone confirmed with covid-19. Sometimes, we pass these people between elevators and we have no idea whether or not they have the disease – since the maternity hospital is on the side of the elevator that goes to the ICUs. And the fear?
As much as we follow all the safety protocols, mask and alcohol gel, it seems that we are being contaminated all the time. I have a feeling that I’m going to enter the ICU and take the virus to my daughter. It got out of hand. It is arriving at nine o’clock in the morning and leaving at ten o’clock, all the time in fear: of a diagnosis, of an exam result and of being contaminated by the coronavirus.
Except that at the same time that we enter with pain in our hearts, cross a corridor and arrive in a room afraid of what we will find there, leaving is also one of the most difficult moments that we live every day. It is to go away and leave our heart here.
It is looking to the side and seeing so many mothers with each child needing something. It is heartbreaking. They are babies that we wanted to be able to do differently, to do more and, unfortunately, it doesn’t depend on us. But there is a wonderful team and I have received training.
So, there is the bright side that I am receiving support that, maybe if I left and went home, I would not have it. I know she is in good hands and I, as a mother, will get there much more prepared to breastfeed, to get her, in short, to be what we came to be: mother and daughter ”.