HIV misdiagnosis almost robbed me of my wife

It was 4pm on July 27, 2016, when Fredrick Omondi, 40, walked in on his wife just as she was about to drink a glassful of poison.

The contents in the glass looked like milk, but milk did not let out such a strong odour. Fredrick lunged at his wife and knocked the glass off her hand, sending it crashing on their bedroom floor.

A week earlier, his wife, Esther Mwakazi, 34, had been diagnosed with HIV during an ante-natal visit at Diani Health Centre, Located in Ukunda, Kwale County.

The news had shocked and distressed Fredrick, because as far as he knew, he had been faithful to his wife throughout their marriage. His first thought, of course, was that his wife had cheated on him. Esther, distraught, swore that she had never as much as looked at another man ever since she met him.

Seven days before this incident, on July 20, 2016, Esther, then two months pregnant, had decided it was time to start her ante-natal visits. She chose Diani Health Centre, a public facility. When she arrived, she found about 10 expectant women waiting to be attended to. When her turn came, her blood was drawn by one of the three health care workers, all women, her name recorded, and then asked to wait outside for the results.

After a couple of minutes, the healthcare worker who had tested her called out her name.

“When I sat down, she showed me a test strip, told me those were my results, and then asked me what I had observed and what it meant.”

Esther had been taken through the test process, and had been told what to expect and how the different test results would present themselves. She was also not new to the testing process, since she already had two children, and had gone through the same process.

The strip showed two lines, which meant that she might have HIV. By then, her head was reeling, so many bad thoughts colliding within her, unable to comprehend what she was seeing.

“I was tested again, using a test kit that looked different from the first one, and then told to wait outside for results. I was then called in again. The strip that was presented to me showed the same two lines.

“They took me through the routine counselling, but I did not hear a word of it, though I heard that part where they asked me to bring my husband for HIV testing the following day, as well as our one-year-old son, who I was still breastfeeding,” she says.

30 TABLETS

They also informed her that they would immediately start her on antiretroviral drugs (ARVs) to prevent the growth of the virus as well as protect her unborn child from infection.

“I was given 30 tablets and asked to swallow one daily without fail, and then go for more when they were over,” she says.

Even as she automatically nodded her assent, she was immensely troubled by the unexpected news.

“My first suspicion was that I had gotten the virus from my husband. When I broke the news to him that evening, he was shocked, but he agreed to accompany me for the test.”

Esther’s suspicions were, however, proven wrong the following day when her husband tested negative. Her one-year-old son too tested negative.

The medical officers at Diani Health Centre, however, put her son on ARVs, explaining that it was to rule out any possibilities of HIV infection. They even counselled the couple on how they could co-exist as a discordant couple.

But two days later, Fredrick could not keep up with the charade of supporting his wife, whom he suspected of having an affair. A marriage that had been harmonious and loving began to break down. Fast.

Fredrick would, for instance, refuse to eat the food his wife cooked, and kept pestering her to tell him where she had gotten the virus from, since it had not been from him.

What he did not know was that she was also battling with the same questions.

“I was not at peace either. I kept asking myself questions, many questions, some very absurd, such as whether I could have gotten the virus through touching an HIV-positive person, yet I knew HIV is not spread this way,” says Esther.

She was on the fourth day of taking ARVs when the side effects of the medicine began to take a toll on her.

It started with dizziness, nausea and vomiting, shivers and serious body weakness that made her unable to perform her usual tasks.

Their son was not spared either, suffering similar symptoms in addition to dull eyes, serious-looking skin rashes, irritability and loss of weight and appetite.

Fredrick called the health centre and told them about the serious reactions his wife and son were having, but they told him they were normal, and emphasised that they continue with the medication.

The symptoms, however, got worse and Esther started bleeding from her private parts.

“I was afraid that I was going to have a miscarriage,” she says.

SECOND OPINION

Her husband rushed her back to the health centre and asked them whether they could change her medication, but they told him they could not, since it was the medicine that all HIV-positive expectant women took.

She was, however, given a prescription for medicine to stop the vomiting, and referred her to Msambweni District Hospital, in Msambweni Sub-County, Kwale, for a check up.

Despite buying and taking the prescribed medicine, the vomiting did not stop, even though the bleeding did after they sought treatment at a nearby private health facility.

Her husband, fearing for her life since the symptoms seemed to be getting worse, asked her to stop taking the medication as they figured out a way forward.

By then, two months had gone by following the diagnosis. Desperate, Fredrick advised his wife to go for another test, this time at a private facility located in Ukunda. He reasoned that perhaps here, she would be given different ARVs.

On September 14, 2016, accompanied by her son, she set out for the dispensary, only to be informed, after a test, that she and her son were HIV-negative.

“Unlike at Diani Health Centre, the test was done in my presence, and as I waited, I explained to the nurse what I had been going through. She told me that I had made a sound decision to seek a second opinion because sometimes, expired testing kits give faulty results.”

“Her remarks shocked me and I wondered how all my retests at Diani Health Centre turned positive thrice yet they had used different test kits each time.”

When her husband heard the news, he was immensely relieved, and could not help wondering how things would have turned out had he not walked in just as his wife was about to end her life two months earlier.

Just to be sure, though, he advised her to go for another test at Coast Provincial General Hospital (CPGH) to further verify the test results from the private clinic.

On September 22, 2016, accompanied again by their son, the two were tested for HIV at CPGH. Here too, the tests were done in her presence.

Mother and son were found to be HIV-negative.

HUMAN ERROR

After explaining her story to the medical officers at this hospital, they advised her to immediately return to Diani Health Centre and report the findings so that they could take her and her son off the medication and close her file.

Esther also took another test at Kwale Hospital on September 29, 2016, and this too tested negative.

Following these confirmed results, the officials at Diani Heath Centre expressed remorse, explaining that human error sometimes occurred, or perhaps there had been something wrong with the test kits used.

They also asked the couple not to report the matter, and asked them to hand over the book where they had recorded the results so that they could “rectify” them, but they declined.

The couple says that they are going to press charges.

“I suspect there may have been incompetence by the medical personnel who tested my wife and son, or that the test kits they used were faulty,” says Fredrick, adding that when his wife was tested at the centre, they indicated that her blood group was B+, yet she is B-.

Esther says that she and her son have undergone a lot of trauma together, trauma that has spilled over to the rest of her family, which has suffered greatly following this misdiagnosis.

“I have really suffered a lot these past three months; the physical pain, the stress, helplessly watching as my son suffered, watching my marriage crumble due to someone’s negligence, it is unacceptable.”  

“If you have been diagnosed with HIV, do not be satisfied with tests from one facility, seek retests from another one to be completely sure of your status,” she advises.

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WHO IS TO BLAME?

When we sought to clarify this matter from Diani Health Centre, they referred us to the Kwale Chief Officer for Health Kishindo Mwaleso, who confirmed that indeed Esther had been diagnosed as being HIV-positive at the health facility.

“There is a standard which is usually followed when testing a person for HIV. One is tested the first time and if the results are positive, one is tested a second time,” he says, adding that when Esther was found to be positive after both tests, as is the standard procedure, she was started on ARVs.

He added that both tests come in sealed kits, which are provided by the national government.

Dr Mwaleso said that though he empathises with the couple, such cases sometimes happen, stressing that test kits designed for testing various illnesses are never 100 per cent reliable.

“Reliability of test kits is usually about 99 per cent, and therefore on rare occasions, such cases occur.” He added: “The fault may have been on the kit or an interaction of the kit and the reaction of the patient’s body - the best way to conclusively determine what happened would be a DNA (test) to test anti-bodies.”

In response to Esther’s blood group, which was said to be B+ at Diani while she is B-, Dr Mwaleso said he was not privy to that aspect of her case but would investigate it further. 

Comments from NASCOP

According to National Aids and STI Control Programme (NASCOP) head, Dr Martin Sirengo, there are standard procedures and guidelines that are used when testing a person for HIV, and before starting them on ARVs.

“The aim of HIV testing is to give correct results, and we have protocols that guide healthcare workers other than training them on what to do during the testing and what to do after, depending on the results,” said Dr Sirengo in a phone interview.

He added, “Our protocol are very clear on how a health worker can ensure they get accurate results when doing HIV tests. When you are tested by the first provider and you are found to be HIV-positive, you are not started on treatment, the recommendation is that you get a second test using a different health worker to ensure the result is consistent.”

The NASCOP head also added that the second provider also performs the test in a different setting, and once they get a similar result, then the test is confirmed.

It is also required that the person being tested sits and waits for the results in an open setting.

“If the first test is HIV positive and the second HIV negative, the right thing to do is not to even go to another health facility for testing - we recommend that the sample is brought to NASCOP to confirm the result with an advanced test procedure,” Dr Sirengo added.

He noted that if tests are not done using the right procedure by trained medical officers and are stored poorly, without following the required recommendations, they can also give false results.

He added that they have a national system of periodic checking of the competence of the health workers where they give healthcare workers anonymous samples to test and give results, which helps them in detecting workers who could be flouting the rules.

“Cases of false HIV results do happen, but are very rare. In a year, we may get a report of one,” added the NASCOP head, who said that they will investigate this case, and do their own HIV test before commenting on the case further.

Have you ever been misdiagnosed? Would you like to share your story with us? Please email [email protected] or call 0719038468.