(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.