I wish I knew….
Ignorant mother regrets losing her baby to Aids
The guest speaker at the meeting probably left her regretting why she had attended. To her, his words were so touching that her attention towards him could easily be noticed by almost all those present.
But when I had a chat with Zawadi Wangeci immediately after the celebrations to mark the International Aids Day at the Kenyatta International Conference Centre in Nairobi, she expressed her gratitude that the speaker, Dr James Muraguri, the head of the National Aids Control Council, had answers to an issue that made her treat her baby in a manner she believes was very cruel.
Wangeci, 33, flashed back to the experience, a trying one that is filled with lessons for today’s woman.
‘The labour pains started as soon as I picked my handbag to leave for the office,” she starts off her story’. I was in a rather light dress for the cold July weather, but I had been having hot flashes, so I figured I would be fine.
The previous night had been an uncomfortable one but labour was the last thing on my mind as my due date was two weeks away. That morning, I called the company driver, who minutes earlier had dropped me at the office, to take me to hospital. My husband had left the day before for a three-day seminar out of town, safe in the knowledge that he would be back way before the baby was due.
There was a quick examination as soon as I reached the hospital and was wheeled straight to the labour ward. About an hour later, my baby girl was born. Since the delivery was normal, we were ready to leave the next morning. This was just perfect – we had two boys aged six and three. So, a girl would just complete the family portrait. We had already agreed that she would be called Melissa, after her grandmother.
I spent all my time with the baby. I was very particular about breastfeeding – I did not even give her water. She was a healthy baby; very beautiful eyes with long fingers and adorable nails. Looking at her, you would guess that she would be very tall.
At six weeks, we took her to church for her dedication. It was like a family re-union. My parents and my three brothers with their families and my husband’s family were all there. We had lunch that had been prepared by the caterers I had hired. The last of our visitors left at about six in the evening. I was ready to retire, too exhausted from the day’s events.
At about 2 am in the night, I was awakened by what sounded like Melissa’s hiccups. It was not unusual as the hiccups would go away as soon as she fed. I switched on the light and moved over to pick her from her cot, just next to my bed.
She was lying on her stomach. When I turned her over, she had vomited and was almost choking on it. She had a slight fever. I changed her and administered first-aid to bring down the fever. Being a third time mother, I knew fevers were normal with babies.
The next morning, she still had the fever and was not breastfeeding well. So I took her to hospital where the doctor diagnosed pneumonia. The doctor recommended admission on the grounds that she was still very young and needed close observation. We were in hospital for three days-three very long days.
By the time she was six months, she had been admitted four times. The doctor who discharged her the fourth time asked that I go for a review at his clinic in a week’s time. On the review date, after the doctor had done the routine checks, he asked the nurse to leave us alone.
‘Have you come with your husband,’ he then asked me. ‘I need to talk to both of you,’ he added before I could answer. My answer was in the negative. My husband was on three-week training in Canada at the time.
‘I recommend that we do screening for the girl. I don’t know whether this was done when she was born but looking at her medical records, we just have to do it now.’
‘What is screening?’ I asked ignorantly.
‘Screening means testing for HIV,’ the doctor answered. That had me argue with the doctor for about an hour. I was bewildered. I had been tested and found negative three months into my pregnancy. So, what was this all about? Could it mean that Melissa had contracted the virus by any chance? But from where? I had been faithful to my husband.
Well, the doctor finally had his way. I agreed for the test though with a lot of skepticism. I was kind of afraid it could turn out positive, but I knew that was a long shot. Nothing can explain my shock when the long shot became the reality: Melissa’s results turned out positive!
After the first test, I applied for leave but the time off did little to assuage my feelings and fears. I was so helpless, I cried a lot. I had three more tests carried out on her at different laboratories after that to confirm and re-confirm. I was so devastated. How had she contracted the virus? I had not had any blood transfusion myself throughout the pregnancy: I had been absolutely faithful to my husband. So, how could this be possible? How could dear Melissa have contracted HIV?
It was only after these tests that I noticed my daughter’s milestones had really delayed. At seven months, she could sit on her own but could not stand up straight. Her legs seemed weak at the knees.
All this time, I had not told my husband what was happening. When he came back, I told him Melissa had an appointment with the doctor. We had agreed that the doctor should be the one to break the news. He was so close to the baby and such news would break his heart. And his heart did break at the news.
My husband became such a wreck; I had to be the strong one! He did not talk about it, not even when I tried to bring it up. I had my suspicions. He must have been the one who passed on the virus to her, making him not wanting discussing the subject. Was it guilt or an act? But well, my priority was Melissa. Any confrontation would have to come in later. There was so much to learn and to deal with.
Luckily, Melissa seemed quite healthy. For once, her health status became the least of our concerns. One afternoon, while I was out, my husband sneaked back home and took Melissa for yet another test, the fourth one. He only told me about it in the evening. Why the secrecy, I didn’t understand but I was too exhausted to risk a confrontation.
This time, he had had her not only tested for HIV, but a viral load and CD4 count as well. The viral load is a test done to check the amount of HIV virus in the blood while a CD4 test checks the both of the body.
We picked the results the next weekend, a week and a half after the tests. Melissa’s CD4 was at 18. In other words, she was hanging on to life by the skin of her teeth. Her immunity was completely gone and she was just surviving. The doctor warned that she could succumb to something as simple as a common cold. He advised an Ante-Retroviral (ARV) therapy immediately and referred us to a clinic where we would get the drugs. We got the drugs but I put them aside. Melissa never started taking them.
Since my daughter’s first HIV test, I read a lot about the virus. I had read how ARVs could have negative effects on patients. I was also struggling with the moral issue of having my eight-month-old baby take drugs for the rest of her life-for something she was not responsible for. .
With all these in mind, I ended up buying some milk powder from an alternative medicine shop plus an assortment of other tablets for chewing, which I was told were good for boosting immunity both in adults and children. I changed my baby’s diet, introduced her to camel milk, more fruits and vegetables and even special porridge.
True to my expectations, she improved. Her appetite grew and within two months, she had gained weight. By the time I took Melissa for her year-one immunization, even the doctor was impressed. She was so lively and was even learning to crawl and talk.
Hell broke loose again at 18 months when she was learning to stand up by herself and to walk. It started with a bout of diarrhoea and she was admitted in hospital for four days. By the time we left the hospital, she could not stand on her own anymore and had lost a lot of weight.
She completely lost her appetite. Even the supplements I was giving her failed to make any difference. One idea came to mind; the ARVs. Three weeks into giving her the ARVs, my baby was fine again.
After a month, I took her for a review and the doctor wanted to know why I had not gone back to the clinic since I took the drugs. I told her the truth. I got the feeling the doctor had seen the likes of me – a mother slowly losing her mind; unable to handle a gravely ill baby. She consequently referred me to a counsellor who took me through an hour’s session on ARVs and children. Well, this was unnecessary as I had already resolved putting Melissa on the drugs anyway.
Three months down the line and Melissa was now making steps-unaided. New challenge: How was I going to explain to my daughter about the drugs when she was older? How long would she live on the drugs? Once more, I decided to withdraw the drugs and put her back on the supplements. One month, two months, and all was well.
Then, Melissa went down with diarrhoea and vomiting. It was horrible, and she was completely dehydrated three hours after the onset. It was a task locating her veins for the doctor to administer fluids intravenously. In fact, the entire hospital came to a standstill with everyone being called in to help. I watched the doctors try to save Melissa’s life. All was in vain.
She passed on painfully, weak and utterly dehydrated. I felt so much mystery, utterly devastated and actually wished we could have switched places. I don’t know how I am ever going to forgive myself for being so ignorant.
I was terribly bothered by baby Melissa’s death and I decided that we had to get tested for HIV as a family. Although I knew no amount of testing on the rest of us would bring my baby back, I still felt that we needed to do it, if only for the record and maybe as an encouragement to expectant women especially, who should test several times during the pregnancy.
On December 1, 2010, six months after watching my daughter die, my husband, our two sons and I went for our HIV test. We did the test at the KICC grounds in broad daylight and discovered that my husband and I were HIV positive, and everything fell into place: Our dear Melissa must have contracted the virus when I was pregnant.
If I could hold Melissa in my hands again, I would do anything to give her a chance to live. If I only knew then what I know now …. ”
Names have been changed to conceal identity for legal and moral reasons
END: BL 38/32-34