First, a warning. This piece is about emotion and condolences. The text contains some tenderness; continue, if you wish. I have wanted to tell this story for a long time, but I had to wait for a while to revisit my memory and to visit two of the characters.

Liz shared little time with us, her short biography is full of hope, anguish and love. I will tell my little part as doctor and witness, as storyteller and casual photographer. Liz was on my list but that was a busy afternoon, so I had decided to wait for the next day. The night was tough and she got worse without warning. More oxygen, more medication, she was intubated early in the morning. Don’t worry, we will have other opportunities, she will get better soon. I was wrong. Liz remained connected to a ventilator and other devices for long weeks.

Almost three months later, it was Father’s Day week. The extubation was planned for Sunday. All the doctors were optimistic – it will work, we hope.  I was ready with my camera. Even if it fails, I would have some time.

Liz Estrela was a beautiful baby with a powerful name, “Liz Star.” She arrived from the maternity ward when she was one month old. She had Down’s syndrome and cardiopathy with pulmonary involvement. The intensivists and cardiologists were considering the best therapy options, and there were some proposals. She never responded to any of them, even the more innovative and experimental suggestions. At that time, we knew she couldn’t handle surgery.

Andréa, the mother, was gentle and lovely, but she was exhausted. Her sweet gaze was sometimes one of doubt, sometimes of pure love. Everyone was involved in the battle somehow. There were days that she didn’t want to talk. A select few were chosen for special empathy and consideration. To them, she opened her heart during certain late nights. Igor, the father, was a big man with large green eyes, sometimes on fire. One morning, after a long night, he left the ICU and went straight to the emergency room. He was flushed and sweaty, we suspected his blood pressure. We offered help, he smiled and confessed, big guys never wait in the ER, we just put a hand to the chest and they rush us through, don’t worry. I loved the morbid joke. We’ve had other conversations, more serious. He had questions and was in a hurry. We had no answers and no time at all.

On that Father’s Day, my mission was to photograph Liz and daddy Igor. It was not my duty, but I was supposed to distribute pictures and leave a message for all the fathers. I put a little chocolate stapled to a piece of paper. The text was about a father, a hydraulic technician who had developed, with a neurosurgeon, a prosthetic valve, so he could aid his son with hydrocephalus. He was not in time to save his own child but helped thousands of other children with the invention. It was a story-gift, to think about the parent’s role and effort. In Liz’s room, I put it carefully on the little table in front of her bed. Nobody noticed. The whole team was there. I was visiting the other rooms, thinking about if Igor would invent a new heart for Liz. I passed in front of the room number five a hundred times, waiting for my turn.

It didn’t happen. Liz was re-intubated immediately. That failure was remarkable and it meant new decisions and resolutions. The parents were devastated. Liz became unstable, as did we. A new try was too risky, we had no more therapeutic alternatives. On that same day, we decided for a tracheotomy. They had my word, the photo was a promise. But not on that day.

A few days later, the father asked me, does she have a chance of going home? I couldn’t answer, lost in hope, commitment and reality. I tried to say, if your concern is about permitting some feelings, too late, you are already attached to this beloved little baby. I continued explaining something about life – it may be a short trip, – there is no right emotional quantification or qualification. – we do not decide our feelings, they just appear without our permission. A thousand words like that, I guess, I meant in a good way. I finally stopped and after a pause, he looked deeply into my eyes and said: I don’t get it. I would never repeat that speech, I couldn’t. I looked across the room, I started to check the flow of rehydration solutions with my index finger. Everything is ok, I might have said with my head. I will be right back. My point was meaningless, if that baby was already dear to me, what more I could say to her daddy. The privilege of love was not his question, neither mine. I think he got it, in a way. I arrived in the doctor’s lounge as a fugitive.

The meeting could longer be postponed. We had a long conversation, professionals and parents. We were convinced there were no more treatment options. We had to be honest to the family about next steps. Liz required higher doses of vasoactive drugs but she was not responding to them anymore. We added more analgesics and sedatives, so she was interacting less and less. The palliative approach is never easy, we followed a respectful course, we offered care and direction. We were again in the most delicate and painful situation in the ICU, the child and parents’ last moments.

I didn’t forget the photo, I have to say. After the tracheotomy, Liz was allowed to go to her mother’s embrace. They spent most of the time that way, Liz was safe in the gentle swaying. In one particular visit, I realized that Liz was always in fashionable clothes, dresses of all colors. I asked her mom how that could be possible, how they could fit with so many tubes and cables. Andréa told me the most unusual and tender secret. A simple, smart and elegant solution. She cut all the dresses in the back side. Liz was covered and well dressed but we could access her little body for monitoring, inspection, medicine and curatives. I was astonished with the scene. I asked her to let me take a picture, she had to see that from my angle. She tried to reach her phone but she couldn’t move. That is why I have that special picture in my gallery. Liz was beautiful, free from buttons and zippers. I’ve been informed that Liz wore all her baby outfits. Mom brought it all, everything she could handle, beautiful stuff that was supposed to be used at home. 

We decided not to increase any more drugs, oxygen or ventilatory parameters. We canceled new exams, reduced monitors and alarms in number and sound. We offered the most comfortable sedation and analgesia. I closed the door for their last words, music or silence. Into their privacy, Liz was cradled as the cutest baby in her prettiest dress.

Suzana Berlim ( 2023)