We received a letter from a concerned mother, Jen*, titled, “Our story: Trying to get tested for listeriosis”. We contacted Jen who shared about the trauma her son and their family have been submitted to by a private hospital. This is her story, and what we're sure might be many others’ too:
The symptoms were worrying
“My 15-year-old son started with a high fever on Saturday night. This was followed by a headache and body aches. Then the vomiting and diarrhoea began. This lasted all night. I gave him activated charcoal, a vinegar bath and Panado, but could not reduce the 38-39 degree fever.
“On Sunday I was reading an article about listeriosis and at the same time my son started to complain about a severe headache and stiff neck. I immediately suspected listeriosis. We drove to a private hospital in Pretoria and took him to the emergency unit.
“We were kept waiting for about 1 and a half hours, with my son shivering from fever by the time we finally saw a doctor. We told him we suspected listeriosis and asked him to do the relevant tests. He dismissed our concerns saying that listeriosis only affects the immune deficient and instead diagnosed my son with appendicitis, despite there being no abdominal pain, apart from the abdominal cramping from the heaving of vomiting.
"They sent him for an X-ray which revealed nothing out of the ordinary. The doctor then booked him in to the hospital overnight to send him for a sonar in the morning to confirm his appendicitis diagnosis. My son was only given an IV and meds for pain and vomiting. The blood work we requested for listeriosis was refused or ignored and instead they tested for malaria, despite us telling them that we had been nowhere near a malaria area.
"They forgot to send him for a sonar"
“Monday morning we called the hospital at 8am to find out the results of the sonar. But they had forgotten to send him. They were also refusing to feed him because he might have needed emergency appendix surgery. He was still showing zero abdominal pain.
"We requested again that they test for listeriosis but we were then informed that my son would need to have a lumbar puncture done to get the results. We asked why they couldn’t do a blood culture and we were told no, this was how it was tested. We obviously refused the lumbar puncture.
“We got to the hospital at 9:30 and had to cause a scene in order to get the sonar done. Needless to say, zero proof of appendicitis but indeed intestinal swelling and enlarged spleen which indicated an infection of the intestines. Still they did not administer antibiotics or schedule a blood test for listeriosis.
“My son was pleading for food at this point as he had not eaten in 24 hours but they refused, saying the doctor had to approve. When the doctor finally came to see my son at 11am, he said that the boy did not have appendicitis but that he would refer us to a physician to test for listeriosis. He was also then allowed to eat.
“Later on in the day, around 4pm, he was finally appointed a physician who, without even seeing him, prescribed antibiotic treatment for listeriosis in the interim, as well as stool samples and, guess what, blood for blood cultures to test for listeriosis.
“The doctor finally saw my son at 6pm – exactly 24 hours after being admitted. We have been emotionally drained by this horrific experience of trying desperately to get my son tested for listeriosis.”
"They insist it's malaria and appendicitis although the results are negative"
We checked in with Jen a day later for an update. At least her son was doing better, but only after she'd made a big fuss.
“He still has diarrhoea but they don’t want to give him meds to stop it. No results in yet, apart from the blood results which still show infection markers. The trauma unit called us but they refuse to meet with us and stand by the diagnosis of malaria and appendicitis, even though the results are negative.
"When I started looking through my son’s file I was immediately surrounded by nurses asking me what I was doing. I said I wanted to see my son’s progress and they asked me if I had a medical background. I said yes, I am a mother of 5! They said I must wait for the doctor to explain the file and I said no, the information should be freely available to and for the patient!
"I then went to the standard manager. She called the doctor and I informed them I wanted him released.
"They told me to sign the form refusing treatment, but I said 'No, I am not refusing treatment, I just don’t think he is getting proper care'.
"The drip was disconnected"
"The doctor said he needed to stay hydrated through the drip and I said, “But I can feed him fluids at home”. And guess what: when I looked over at my son the drip had been disconnected. I asked the doctor if he had authorised it and he said no. The nurse said she didn’t know either. My son then told us that the night nurse had disconnected the drip so that he could go to the toilet and it was never reconnected.
"Well, the silence in the room spoke for itself.
"The doctor was visibly upset that my point had been clearly made about negligence and he signed my son out, gave me his cell number and prescription, and promised to call me with the results.
"The preliminary results came back positive for gastro but nothing conclusive for listeriosis, as the cultures need to sit for another few days.
"It's a national outbreak, getting treatment should be straightforward"
"How can it be so costly and time consuming to test my son for a well-known and life threatening epidemic? I only wanted to test to ensure he didn’t have it and possibly get antibiotics. Instead I am now sitting with a hospital bill for a two-night stay, X-rays, a sonar scan and numerous blood tests! I had only requested the listerosis!"
"Why did they make it so difficult and cause us so much trauma? My son was made to suffer for longer than necessary due to negligence on the part of the trauma doctor.
"The public needs to be made aware of the inadequate medical care out there at a time when treatment for a nationwide outbreak should be a straightforward process."
The family's previous experience with a private hospital ended tragically
The distraught mother explained to Parent24 why she was so anxious to tackle the situation as soon as her son started presenting with symptoms:
“6 years ago our youngest son passed away at another hospital. We took him in that afternoon due to lethargy, pale skin and what appeared to be dehydration, even though I was feeding him breast milk. He was critical and the paediatrician instructed a blood transfusion immediately. We did not have medical aid back then, so we were told the hospital would not treat him. Instead they called an ambulance to take us to another hospital 3 hours away.
“By then my son had difficulty breathing so they gave him oxygen, but they left us standing in the hall as the ambulance was sent back to fetch the incubator they had forgotten. Two hours later my son fell into a coma.
“The trauma doctors only then began to assist us, but still refused the blood transfusion due to our non-medical aid status. The paediatrician came back at this point to do her rounds and when she saw we were still there she flew into a rage. She was furious that no one had administered the lifesaving blood and she ordered it herself on her own name.
"But it was too late. His platelets had dropped so low after battling for 8 hours with no treatment that the blood could not flow to his vital organs and his heart stopped. They gave him adrenaline twice but he died right in front of us. The paediatrician was so mad and she cried with us. The point is, he could have been granted a few more days, weeks, months of life, if the hospital had considered his life more valuable than money.”
*Letters have been edited for length and clarity and names have been changed to protect the privacy of the family.
Do you have a similar story you'd like to share with us? Tell us by emailing firstname.lastname@example.org and we may publish it.
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