(I wrote this at Emilio’s bedside in hospital last year, and misplaced it until recently)
Dear Hospital Roberto del Rio,
When my 19month old Chilean son stopped breathing on Tuesday I did not think about the distinctions between public/private, Chilean/extranjero – I did not even think forward enough to put my shoes on. To see my son’s lips turn blue, eyes rolled back in his head and his small body convulse with seizures drove all thoughts from my mind except “save my baby.” Roberto del Rio is the closest hospital to my house and considered one of the best for pediatric care, and as we rode there in a stranger’s car I had no idea of the trial that was just beginning.
I have no real qualms about the care we received in Urgencia – my son was saved not once but twice and all manner of exams were organized quickly. However when he was transferred to the children’s ward two things happened that was troubling, upsetting and concerning. The first is that my position as a New Zealander with limited Spanish resulted in a condescending attitude being shown towards me by staff with a complete lack of communication on their part. I was told that I should not be there if I couldn’t speak fluent Spanish, medicines were adminstered without my knowledge or consent, exam results were never explained and intimate details about my son’s case and our family were relayed to the other patients in the ward. Important questions were even directed to them. I was laughed at during my attempts to communicate (by the doctor no less) and those who did speak fluent English did not disclose this information. I felt abandoned, stressed and worried because I felt my son was not being laughed and instead of feeling support around me, all I felt was attack. From a medical standpoint, the lack of interaction and interest shown is particularly concerning as vital information about my son’s symptoms were ignored or unheard by medical staff, meaning that they did not have a clear picture of my son’s condition.
The second concern is how my son was treated. He was confined to the cot – his place of rest – during his stay, and received all medical treatments and examinations in it. Twice a day he was left alone for testing for up to an hour and a half. He was not permitted to see his parents at the same time, which in our case is particularly troubling given then the father speaks English and could act as a translator. My son very quickly began to exhibit signs of severe psychological stress and trauma: screaming, violent behahavior to himself, difficulty sleeping, self harm whenever he was left alone or saw a staff member coming. Staff members made derogatory remarks about him to co-workers and other patients in the ward, spoke harshly to him during testing and monitoring, and at times handled him very roughly (including forcefully administering a blood test that caused him great pain). Each time he was forced to be without me contributed greatly to his mounting terror.
I am disgusted that we should suffer such care and psychological harm in a place of care by the very people who take oaths to protect us. That my personal status as a non-chilean should have any bearing upon the care given to a baby is deplorable. To hear Chileans around me say that I must “suck it up or my son will be punished” goes against the core of biomedicine and of human rights in general. We are just two of many who have suffered at the hands of the system and will continue to suffer unless urgent attention is given to rectifying what I believe to be despicable breaches of ethical conduct.
UPDATE: After concluding our week-long stay at Roberto del Rio, and after having unnescessary tests performed, wrong medicines administered and various conflicting information and advice handed out, we returned home. Over the next few months we lived with a severely traumatised child. He could not sleep alone or eat properly, developed a morbid fear of strange people and things and lost weight. It took a very long time for our family to settle back into a normal routine and now, a year on, our son is still terrified of any medical situation.
Roberto del Rio Acceptable Practice Examples:
Urgencia doctors exhibited professionalism
One excellent female doctor in the ward that we saw on the Thursday morning
Quick exams performed in Urgencia
One friendly tecnical assistant during our ward stay.
List of Grievances:
Lack of translation, interest in translation or attempts at communicating with me, despite being our son’s carer
One nurse hurt Emilio while administering a blood test and made no apology
One nurse reprimanded us for not getting appropriately attired before bringing our technically-dead son to the hospital
Spinal exam performed without anaesthetic
Three doctors did not disclose to me that they could speak fluent English in the ward, even when I was visually struggling to communicate vital information
The Declaration of our rights was partially translated into English but most of it was not
All exams were administered when Emilio was in his cot
Despite being told our twice-daily seperaion would last 10-20 minutes, one time it lasted 1.5 hours.
Conflicting information from nurses
Nurses talked about our case to other patients in the room, sometimes negatively
Staff directed all questions to other patients in the room instead of to me
At no time was information given to us about our son’s condition, his test results or his medicines
One doctor laughed at me while attempting to speak
Repeated remarks made about my son being “too scared” and that it was “the mother’s fault.”
No attempt to ease his pain
No nappy cream administered or offered despite having diarrhoea that was acidic. His entire bottom was bleeding and leaking green pus.
No help when Emilio vomited and could not breathe in front of the staff
When I needed help I had to repeatedly ask.
Each concern I raised was met with “no entiendo nada”
I was shouted at allowing vomit to get on the cot sheets
I was kicked awake by a tecnica while sitting on my suitcase
Conflicting medical advice given
Dietary advice given that is not in accordance with common international practices, such as WHO.
The moment when my son stopped breathing was also the moment when I left my body.
I had pictured this happening a thousand times before. When he was a newborn and so helpless in my arms, I’d race to check on him every time he slept, paranoid about ill-fitted sheets and mattress gasses. As he grew, every cough weighed on my mind like a heavy stone, pressing to the corners every other thought. I suddenly saw danger everywhere; I had changed. I was no longer Helen but Mummy, and I was a lioness, ready at all times to protect my cub.
But when Emilio’s eyes glazed over and widened until the eyelids could open no further, my reaction was not how I would have expected. As his lips turned purple and his mouth spewed forth foam, I was helpless on the sidelines as Luis shrieked “What do we do?! He’s not breathing, he’s not breathing!!” His tiny body, just one year and a half old, writhed and shook on the floor as Luis began pumping his chest. I remember Luis screaming at me to find someone – anyone – but his voice was so faint in my ears next to the dull ringing that had begun. Suddenly, I was looking down at the room from somewhere else, watching Luis give CPR to Emilio, but he was not the Emilio that I knew.
Luis screamed at me to go and I ran from the house, barefoot and in my pajamas. First I ran to the store below us. I will never forget the look of disbelief and fear on the face of the woman that works there. We both ran into the street. The first car I saw was Manuel’s, and he was eating a sandwich. “Manuel! My son is not breathing! We need a hospital now!” I shrieked and he threw his sandwich from the window. The next moment Luis was there, also barefoot and also in his pyjamas, and we got in the back. Manuel raced at the speed of sound to Roberto del Rio public hospital, in Recoleta, tooting the whole time so that he parted the cars on Avenida Recoleta like a Chilean Moses. Emilio was alternating between states of breathing and not-breathing, his eyes opening and then disappearing from his swollen face. The moment we arrived we raced through the doors without noticing the guards or other people. Doctors and nurses dropped their cases and came running, and Emilio was immediately hooked up to the IV.
“Why would you come here like that?” One of the nurses asked me when Emilio was stable.
“What do you mean?” I replied, confused.
“What happened that you could not get dressed and put shoes on?” She asked again, her eyebrow raised pointedly to the sky, like a bow shooting an arrow straight at my heart.
I couldn’t find the words at first. All I could think was how much I wanted to wipe her face clean of that smug look.
“My son was not breathing, had turned blue and was having a seizure. There was no time to put our shoes on.”
She just looked at me. “But why couldn’t you put your shoes on?”
The next hour passed in a blur as we waited, spoke to doctors and waited some more. No-one was very friendly and especially not the nurses. Emilio had chronic diarrhoea that one time covered all of my clothes and the floor, so Luis left to go home, and bring us back supplies and (of course) our shoes.
I was holding Emilio when it happened again. Like the calm before the storm, I knew something was about to happen because I remember turning to Luis with panic and saying “Something’s going to happen!” A minute later his head arched back and he began shaking and arching uncontrollably in my arms. I gave him to Luis who put him down on the bed and I ran from the room to find help. I saw a doctor in the corridor ahead and I screamed to him for help and he came running. This time, the room flooded with doctors, and Luis and I were pushed to the side. It was like a scene from a movie.
We were asked to leave the room so that they could do a lumbar puncture into his back to test for meningitis. Even though there were people and children crying all around us, all we could hear on the other side of the door were the inhuman sounds that Emilio made.
Almost straight after, we went with Emilio to the other side of the hospital for a CT scan. There was a delay because Emilio took a very long time to fall asleep with the aneasthetic. I remember the doctor – who was with us thoughout Emilio’s ER stay – thought this was highly amusing.
Luis went in with Emilio while I waited outside. At this point, the morning’s events finally caught up with me, and I turned around into the wall and just sobbed. I stood there, barely able to breathe under the weight of the fear and exhaustion I felt, until I felt a hand on my shoulder. A middle-aged woman stood there with a tissue. “Tranquila,” She told me, “everything will be all right.” Her friendly face was like a beacon of hope for me in that moment of despair.
Emilio did not have meningitis but he did need to be hospitalized to be tested further. We were then transferred to the children’s ward. This was a long corridor with rooms off of it to the left, each one containing four beds/cots. Every wall was lined with windows into the other rooms, and there was one television and one basin. Beside each bed was a single plastic chair. The toilet was on the first floor (we were on the fourth) at the end of a very long hallway. It had no toilet paper or soap. The doctors we saw spoke English (to a degree), were young and very personable. They read me our rights and the rules of the hospital and asked me to sign on the dotted line. I did so. They then asked Luis to leave because only one person could be inside the ward at a time.
Seven days and seven nights were passed there. The first night was agonizing because I could not figure out how to sleep on the chair without a) falling off and b) breaking my neck. The other parents rolled down the side of the cot and lay their heads on the mattress beside their baby, but Emilio was far too unstable to have a side down. I had taken a small suitcase (carry- on size) filled with spare clothes for Emilio and it was on the floor beside the chair. I opened it and sat in it on top of the clothes, and was asleep instantly. Moments later a kick to the leg woke me up to a hissing woman who told me it was the chair or leave. I did not fall back to sleep.
By the time Luis arrived the next morning I was almost delirious. I was desperate to talk to him however, to hear some support and tell him how Emilio had been. I also wanted to tell him that the 20minute window when all parents had to leave their child (morning and night) had actually been 1 hour and a half. All the parents had to wait outside the children’s ward during this time, as it was a time when all the doctors did their morning rounds. We all stood like sardines against the open door, craning our necks for the sounds of our crying children. I heard Emilio hysterically screaming, and the doctor came running to me in shock. Emilio had gone crazy when he had seen me leave, and was now flailing about in his cot, banging his head into the bars viciously hard and pulling his IV out. His eyes were circles of fear. Seeing him like this was enough to break my heart for a second time.
Luis and I managed two words before angrily being told to get out. Our absence caused Emilio to lose the plot again. We didn’t talk, and I went home. I hadn’t wanted to, but I was desperately tired and I wanted to speak to my parents. We had no hot water at that time so I talked to them while I boiled water for a bath on the stove and returned to smoking cigarettes, and then slept in a stupor for several hours.
At the hospital, Luis told me he had absolutely no idea what was going on. Emilio had had numerous tests done but no doctor had spoken to him. This worried me because Emilio did not seem to be improving in any way – in fact he looked ten times worse than when we had come in! He couldn’t stand, he shook, he could barely open his eyes, and all he did was make this horrible noise. He didn’t want cuddles either and just writhed when I held him, but he didn’t want to sleep either. He was desperate for something. I had been forbidden to breastfeed him because of his earlier vomiting, but I could see he wanted something. He had been staring at something fixedly for a while when he began banging his head on the cot. I picked him up and immediately he began to struggle against me. He is trying to walk, I thought, but where to? I put his feet on the floor and supported him and in amazement he went straight to my bottle of water and tried to pick it up. With that I knew there was something he was not getting from his IV, so I went out to the nurses, who immediately told me to go away. Ignoring them, I walked the ward until I found a doctor and strongly requested he see my son. He did so, and agreed to increase Emilio’s IV dose of water. Literally a minute after doing so he was asleep. It was the first moment of silence in a long time.
Night time was a struggle for everyone. It was impossible to sleep when the lights were barely dimmed, when the radio blasted all night, and when assistants and nurses came in constantly singing and whistling. In our room there was a newborn baby who must have been born premature. The mother, a young girl, visited every day but at night the baby was always alone. It screamed almost the entire night, every night and no-one came to look after it. Across from me, there was a mother of four, who had a daughter a few months older than Emilio. She had a number of health issues, and the mother held and breastfed her constantly, to the point where I could only be in awe of her mothering. She later said that her milk had dried up long ago but it was the only thing that could calm her daughter down when she was hospitalized.
Most of the week we didn’t know what was going on because no-one came to see us or answer our questions. I grew to resent the nurses who were very rude, but more so the technical assistants, who lorded about. Very few of the workers had patience with my Spanish ability and often they would talk and make jokes about me while standing right in front of me. After days of non-stop Spanish and emotional stress, I felt as though I was slowly losing my grip of the language. I started to not care. One time I asked an assistant to repeat a question, and she shouted at me, “Why are you here if you don’t speak Spanish? You have no right to be here!” I cried.
I was allowed to breastfeed again once Emilio stopped vomiting. The nutritionist then swiftly arrived and told me it was unhealthy to do so at his age. Luis and I had now taken to arguing during the five minutes we had together every day, and he started questioning all of our parenting decisions. He told me I had been feeding Emilio wrong all this time, and that he needed to be having more sugar. “What the f*** are you talking about?!” I screeched, unable to believe my ears. Turns out the nutritionist had told him that Emilio should be drinking fruit juices instead of water, and that every meal needed to have a sweet treat afterwards.
The expat community really reached out to me during Emilio’s hospitalization, and I cannot even begin to express my gratitude. I had no internet in hospital so every time I came home and waited for the bath water to boil, I would read messages that people – some I didn’t even know – would send. The people down Zapata rallied around us too, and Luis’ father and stepmother provided a further pillar of support. After a week of endless exams and tests, misinformation about Emilio’s condition (“he has “X” and needs to stay here for another week”), rude staff and 2am treks to the toilet, we finally got some answers. Emilio was having febrile convulsions without fever being present, an extremely rare occurrence but not impossible. Or so they thought. They really didn’t have any idea. But they said he was much better and all the tests were coming back fine so we could leave … after all the forms had been completed and we had paid.
“Great! You stay here and I will go and clean the house, and get it ready for Emilio’s return” I told Luis and raced home, with a skip in my step.Our house was a pigsty but I dutifully cleaned it and waited. It was dark by the time these “forms” were completed. There are no words for the look of joy when Emilio returned but the journey was not yet over. As well as having a week’s worth of drugs still in his system and still barely eating, he had also developed an extreme fear of pretty much everything. He refused to sleep in his room, refused to be away from my side, shrieked in terror whenever he saw another person besides me and Luis, and barely smiled for weeks afterwards. He was like a shell. It took months before he recovered emotionally.
Roberto del Rio is one of the best public hospitals in Santiago. It has faster access to resources than the local private hospital. It also costs tuppence in comparison to the cost of going private. I cannot fault any of the doctors, really, who dealt with a high influx of patients very well. The doctors in Emergency were kind and responsive. When the case turned serious, tests were organized without delay. The staff that worked in the canteen were pleasant enough, and the food decent. There were small acts of kindness by several nurses and assistants that I will always remember. Everything else was a shambles. I do not know if the staff were overworked (to be fair, most of the time the nurses just sat around talking) but what I do know is that many times I felt unfriendliness and even animosity from them. Being forced away from my son for indeterminable periods twice a day while doctors poked and prodded seemed unbearably cruel for someone so young that couldn’t understand what was going on. I am thankful that Emilio was looked after and I am thankful that these services exist for people who do not have the funds to afford better, but I am also angry. I am angry that most of the people were too accustomed to not asking questions that they suffered in silence. I am angry that the young girl who left her baby at night did so thinking he was being looked after, but he wasn’t. I am angry that Emilio was forced to hurt himself, day after day, while alone in his cot and no-one tried to help him. I am angry that I was not respected because I am foreign. I am angry on behalf of all the mothers and fathers who cried outside the ward waiting to go back in, or who crept outside to sleep on the floor. I don’t know what the answer is, all I know is that we deserve more. A smile, after all, costs nothing.