We have a palliative patient, Rose, who has recently come to terms with the fact that she will never get better or leave her room. To make this transition easier for her, we decided to install a beautiful big shelf in her room on which she can put all the things she loves. She loves decorative niknaks (which are called “kaggel kakkies” in Afrikaans. I so love that word!). There is a fantastic carpenter we have used often and we decided to give him the job. Once the lovely shelf was put up, I was waiting for the invoice, but instead I got a call from him in which he told me that there would be no invoice. That he does not want payment at all. He explained that he was battling with his faith and had prayed that morning for God to show him something beautiful. Never in his life did he expect that he would find that beauty in a dying person’s room. He said that there was so much grace surrounding Rose, and such kindness from all her carers, that he didn’t just see beauty, but experienced it on a spiritual level. As a result, he felt that he couldn’t possibly ask for money, as what he gave to Rose is so little compared to what she gave him.
It is such a beautiful story, and not unlike the one I hope will now unfold for Silvino Freitas and his family. If you watched the video that accompanies this blog, you might already know that this is a tragedy that has just kept spiraling for the past 300 days. It is my hope that this blog is the start of a return journey for a man I do not know, but with whom I already feel a connection. I hope that when we look back a year, a month, or even a week from now, we will be able to say that this was not an easy journey, but it was beautiful in the end.
My mom reads my blog, and I know there are other sensitive readers, so I promise to spare you the most awful details, but in broad strokes I want to tell you what happened to our new guest. It is just one of many stories in our country, where the injuries due to neglect are far worse than the injuries and illnesses that brought patients into medical institutions.
In early September last year, Silvino was out cycling, and was hit by a car on Van der Bijl road about 2km from our lodge. If only he had had medical aid, he would have been whisked off to Netcare Sunninghill and fixed up in no time. But, like so many people trying to make ends meet while trying to run a business, they had cancelled their medical aid and because of this, Silvino was taken to the notorious Tembisa hospital, known for its lack of service, rat infestation, maladministration, and spectacular corruption. There, between hundreds of others waiting for help, Silvino was left, bleeding profusely on a stretcher with no pain management, no linen, no means to go to the toilet, no hydration and in absolute agony. After more than 24 hours a doctor finally told Amanda, Silvino’s wife, that surgery would be necessary, but that there was only one functioning theatre (in a provincial hospital!) and luckily for them, they could manage Silvino for the next two to three weeks and then hopefully, he would get the surgery… but there was no guarantee.
Amanda knew that if she left Silvino there, he would die. She was forced to sign a RHT (refusal of hospital treatment) and arranged for him to be transported to Charlotte Maxeke late that night. (Can you imagine the trauma and the pain he was in after 30 hours of this?). The paramedics took him to CM’s emergency room, only to be told no one would help him because an RHT had been signed. They had nowhere to go. It was a freezing cold night, and at 2am Amanda begged and cried until a doctor in the ER took pity on them and allowed them to be admitted to trauma casualty. Silvino was moved to the orthopedic ward and surgery was scheduled for the next day.
And then, surgery was cancelled because of loadshedding.
Surgery was scheduled for the next day and cancelled because of loadshedding.
Surgery was scheduled for the next day… and cancelled, not because of loadshedding but because of an admin issue.
Finally, the surgery actually happened, a week after it should have. Wounds were finally debrided and drains inserted.
The very next day, the hospital confirmed an infection. Another surgery took place and Silvino was moved to the “sepsis ward”. So begins a horror story that just again confirms the tenacity of the human spirit, as I do not understand how he survived the next 300 days. As I read through the diary Amanda kept of what happened on a daily basis: the miscommunications, the confusions, the infections, UTI’s, additional surgeries, lack of care, theft and on and on, I cannot believe this man survived. I also want to weep for the people forced to work in these hospitals, under such awful conditions. And then, of course, my heart breaks for the other patients, who do not have a wife that is able to fight so hard for them to survive the system. What about the 99% of the people left at the mercy of this revolting health care system (or lack thereof)?
For a while in the beginning of October, there was an issue with his isolation room being extremely hot and having no ventilation. The staff refused to open the window, saying that Silvino is a jump risk. (The horrifying truth is that that staff had tied him up and he could not leave his bed at all. The fact that the restraints were too tight and caused more damage to an already frail body is just soul destroying). So it spiralled with vomiting, infections, fevers, delirium, dehydration, distended abdomen, breathlessness, low kidney function, sky high sugar levels. It was established that he had fecal impaction, and an enema was ordered. This is a simple thing we do at the lodge every day, so trying to understand why this seemed completely impossible to get this organized and done is beyond me. . In the meantime, it was clear to the family that he was getting sicker and weaker. Silvino started to die.
Almost a month after the accident, Dr Brich entered his room and thank God, did her own assessment. Silvino was so sick by now that he was moved to ICU. There, his wounds from the restraints that were infected got some attention, but he now had a toxic megacolon, UTI, bed sores, pneumonia and chronic osteomyelitis (an infection in his bones caused by bacteria or fungi). One day, he got so sick that his colon was removed in an emergency surgery and a colostomy bag got attached. From then on, it just got worse. His wife fought every day for someone to care for him, and for items she brought in not to be stolen or moved. He was fitted with a PEG feed and trachea and literally faded away before his loved ones’ eyes.
Amidst this hell there were doctors and professors that stood up and helped, but most of the staff were too tired, too indifferent, and too callous to give a damn. It made no difference to anyone if he lived or died. There is no system in this “health system” that the ANC has bankrupted ethically as well as financially. The department of health has made sure that there is no dignity left in the hospitals and that there is no hope. I wonder how they will use the NHI to further steal and destroy what little is left?
But here comes the good part (thank goodness). My husband saw Amanda’s pleas for assistance on social media and both of us realised that this could have happened to any of us. These are our neighbours. This happened in our community. We need to step up (at our step-down… see what I did there?) and help. As a community, we are going to join hands and help this family. We want to help restore Silvino’s self-worth and his body. We’d like his wife to feel an army around her and let her relax, while others now take over the fight. I cannot wait for Silvino to feel the sun on his skin for the first time in 300 days, for his wife to lie next to him with her head on his shoulder, for him to see birds and nature and our garden, for his dogs to come visit him and for his kids sit in a friendly room without beeping machines and bad smells and talk about their lives. I just want there to be grace and beauty in his life again, just like there is in our Rose’s room.
We are delighted that the amazing professor that cared for Silvino, and definitely saved his life, as well as a small team of doctors and staff, that despite huge obstacles still manage good care, have declared him fit enough to be discharged this week. We have his room ready, and a host of aligned services have already committed to help free of charge. The wonderful team from Stewart physio therapy will do his daily therapy (although, maybe we should not be so happy about this, Amie Stewart is my physio, and she is terrifying. She is so beautiful and so gentle but BOY does she hurt you and make you work!) Rachelle Biatz, a great social worker in our community, will work with the entire family and see how they can readjust after this trauma. Byron Werbeloff will help Silvino and Amanda deal with all the psychological issues, Tracy Scott who is a life coach for international companies and keen cyclist, will help the family plan the road ahead. Christine Rice and Martene Michael, renowned dieticians, will help make sure he gets all the nutrients needed in his PEG feed to make a full recovery.
After 300 odd days of unimaginable pain and horror, there is hope in community and compassion.
Please see the link for Silvino’s back-a-buddy page if you want to be part of this community of hope and make a donation towards his recovery.
https://www.backabuddy.co.za/champion/project/amanda-freitas-5487494943808088080?fbclid=IwAR06yUwfsQdqEF3bz47vIn_bilcNz3wzoWIviFv4NMaifSzMcGvICcSMuhA