“They don’t know the constant fear you have”: story of a mother whose daughter was hospitalized with syncytial

“I am writing this short story to decant all that has happened to us. I have 3 daughters, one is 12 years old, another 8 years old and the youngest is only 2 months old. . She, the youngest, my newborn, caught the syncytial and it turned into bronchiolitis very complicated. One night when his lungs were very tight, we had to go to the hospital urgently.

It never occurred to me that they were going to leave her hospitalized . It was bad, saturating a little, it was very difficult for him to breathe. They left her on oxygen and since we are in a time of respiratory illnesses we had to wait several hours before they brought her up to the room. Luckily, the hospital I took her to has a policy that mothers or caregivers of minors can stay with them and sleep there. With my baby, we spent 4 nights in his care.

This is the second time in my life that I have had to hospitalize a girl. And it’s very strong, because you lose all authority over them . There is an act in mothers of trust, faith and dedication to the health care system that must be done. It is a very paralyzing fear. In addition, we see children who are in potentially fatal conditions and it is very strong. In there, death pursues you, there is a risk of intra-hospital infection, you are on permanent alert, in permanent emergency.

Fortunately – and contrary to my previous experience – from the first moment, all health officials treated her with love. And I want to emphasize this because especially the technicians, nurses and kinesiologists had a level of gentleness as if they were treating a parent’s daughter. It’s still strange and hard to live in a hospital It’s like a parallel world. I wasn’t sick, she was my daughter, so my only job was to give her emotional well-being so the medical team could do their job.

The hospital is home to many fathers and mothers as they have space for chronic patients such as oncology and cardio, so there are many families living inside. There is a room for the parents, which is a mini cafeteria run by two women who listen to you and always welcome you with a smile. There you can share with other dads and moms who are going through the same thing. I insist on “there”, because being in the rooms you cannot interact with other caregivers of minors due to the risk of contagion. When you are in the common room, your space is just a shepherd and your daughter’s or son’s bed. Around you, health officials come and go, day and night, shifts are distributed presenting you as a case This is Juanita, I came everyday for anything, it was done to her, park and she is currently taking these meds. Something like that. With my daughter, there were always comments like “And she He’s the most smiling baby, our patient little star (and my daughter was smiling without her teeth and everyone was drooling).

My husband stayed home to make everything work with our other daughters. School, meals, going to bed early, they even had to celebrate the eldest’s birthday. I felt alone in the hospital , glued to my cell phone uploading ridiculous stories to my instagram to escape the place, watching my daughter barely breathe, ignoring the oxygen, the machines, the other buses crying, because I couldn’t fall broken down, I didn’t want to be afraid to defeat myself. I didn’t make the situation public because I didn’t want to be bombarded with worries and report daily over and over again. I isolated myself from the world and used social media as a big lie that everything was fine in my life, when the tears were falling on their own for some reason.

The helplessness of having a hospitalized son or daughter is so great. They don’t know the constant fear you have . When we came out I felt very suspicious, I felt the recovery was still lacking, I felt there was pressure for the beds because we are at a critical time. I came home still scared and it took me at least a week to let my guard down and sort out all that I had been through. Just as we got home, the media frenzy about dead babies every day began. I never watch the news, but it’s impossible to ignore what’s going on. As a family, we are not the type to be alarmed by viruses and illnesses, but this time it was impossible not to be afraid. I saw these devastated mothers on television, I had my baby with me and I felt it so strongly. My daughter was saved. There may have been many reasons, but it doesn’t make me want to think about it. I cherish every moment since we came back from the hospital in our life.

Carmen Luz is 42 years old and is a real estate broker.