Pediatric HIV, How early is too early to disclose?

Statistics from the WHO show that across the world there are approximately 1.3 million children under the age of 15 living with HIV. These children will need anti-retro viral therapy and medical care for their entire lives to stay healthy. However, many of these kids don’t even know they have HIV.

Early disclosure of HIV to children has various benefits including increased medication adherence, psychosocial development, decrease anxiety and depression and generally reduce mortality rate. Its better to disclose to children their HIV positive status before they become teens to avoid the complexities of adolescence. From the communities i work with those that disclosed to their children earlier do not experience as many challenges with their children as compared to those that disclose during adolescence. Its advisable to disclose to the child as early as possible because as you buy time,the child might just get the information from another source which will complicate issues.

Take for example Sam from the Mathare slums in Nairobi. He is 13 years old and in class seven. Since class four, he has been learning in school about the dreaded killer disease AIDS. The teacher has been emphasizing that they should be careful and not have sex because they would be in danger of contracting HIV that leads to having AIDS then death. Sam was born with HIV but did not know about it till last month. He has been taking his medication religiously till he got to know why he had been on medication all this while. The most unfortunate thing was that Sam got the news from friends and confronted the mother about it. The mother took him to the comprehensive care center and with the help of a pediatric nurse, they confirmed that it was indeed true that he had the virus.  

Sam's mother felt that Sam was still young and therefore was buying time but had plans to disclose to Sam once he finished primary school. She did not want to interfere with his studies. But that was never to be and now Sam is blaming her for sleeping around and then transmitting the virus to him. Since Sam knew about it last month, he has refused to take his ARVs and accuses his parents of infecting him. His mother has been crying through out this one month that Sam has changed into a hard nut. She has invited counselors, other children living with HIV and older ones too but Sam is still quiet. He does not talk to anyone nor does he want to take the meds. He listens to those who talk to him and you can clearly tell that he is not listening or he just don't care. 

Know of anyone who is buying time to disclose to their children of their status? Run and advise them to do it before adolescence hits. Its complicated!

When will stigma end for it to be easier to mingle?

The process of finding a husband while HIV positive is such an uphill task especially here in Kenya. The HIV epidemic is so feminized with 60% of those infected being women. Men who are HIV positive are hardly available and those that are there are either taken or are dating more than one woman. Men stifle their feelings and most choose to die with the secret and mostly end up engaging in substance abuse to escape from the reality. On the other hand, men who are HIV positive have a thing in common i tend to believe or is it women am not sure, they carry so much baggage. I have tried dating a few and some of them its like HIV confused them and they do not know exactly what they want. 

The last relationship i had i thought it was to be forever. The guy had everything i was looking for in a man and what he didn't i had chosen to ignore. I actually dreamt of our life together. However, it was never to be. Just because i was a mother of a boy and he did not like my tribe, he used that against me and told me that he had never loved me from the beginning. I could not tell why he claimed so yet we had been in this relationship for more than two years. At two years, i obviously had started wondering why he was not saying anything about our future and therefore pestered him and that's when he threw the towel. He had wasted my two years, yet i am growing older. I was so mad i could not imagine loosing him to another woman. I used to talk to him a lot and to make sure i did give up on him, he told me he had found the right woman who came from his tribe. So i was not the right woman all this time? I stopped talking to him and i finally let go. Up to now i have not been able to date again. The fact that he was seeing me and seeing that other woman at the same time hurt me a lot. I hope he isn't going to waste another woman's time.

This afternoon, we were visiting a colleague in hospital. As we waited, a friend appeared and she was excited to see us. She was yearning to talk. We used to attend the same support group three years ago and we have not talked for long. After exchanging the usual greetings she was quick to narrate her pain in just a few minutes. Esther got into a fight with her former boyfriend who they were planning a wedding together. He had already met her parents and had been given permission to go ahead with the wedding plans. But before then, she noticed that he had deleted all phone numbers of male friends including cousins from her phone. On asking him, a fight ensued. The matter reached her mother who demanded that everything he had taken to her home be returned immediately. The guy hurried and married. He then ensured that he sent photos of his current relationship including the baby to her email. So she asks wouldn't he leave her in peace if he is happily married? Not only is that enough, he has also started sending messages that he still loves her.  

I cant wait for that time when women living with HIV will just be like those living with other terminal illnesses. That time when there will be no stigma and dating HIV negative men will be easier. I have seen many take off once i mentioned HIV and i gave up disclosing. The process of disclosure is not easy and just when i have got courage to say it, the man takes off. For those that have not taken off and are still friends, i feel terrible that HIV is the only thing that keeps me from having a lasting relationship; or do i say they are not courageous or loving enough to take the risk? Take for example Simon, he is such a good man but since he knew my status we are just friends. We share a lot including preparing dinner at each others houses but its just that. I am here still waiting for the right one and the clock is ticking. At my age, some have given up but as Pauline i am not giving up. I believe he is somewhere and he will be better than all i have met. I will ask him where he has been all this time. 
 

How will Kev handle the knowledge of his mother's HIV status?

Yesterday i visited Kev at school. I was among the first parents to arrive. This time i had woken up early to ensure i arrive as early as possible. The last time i visited he cried so much that i am a mother who always arrive late. He actually refused to eat the food i had taken so much time to prepare only to allow those that had joined me to visit him have all of it. So yesterday i ensured am alone with him for like an hour before everyone else arrived. Once he saw me, he came running to me screaming ''muuuuuum'. He was full of excitement and on seeing what he likes most; junk food, he was over excited. I let him have as much as he could. I allowed him to narrate to me how school had been including teachers and classmates, his trip earlier to Menengai crater, his need for more pocket money etc. I could see a boy who is so proud of his mother. 

As i traveled back to Nairobi, it got me thinking. Kev does not know my biggest secret. He is the reason why i am Pauline and not my real name here. Some day he will know, how will he take it? Will he judge his mother? I got HIV after i had already separated with his father, will he judge me after knowing that i had sexual relations with another man other than his father? What if he knew that i had engaged myself sexually with an older man? Will he believe me that i did it so that him and i can have a brighter future? Will he think that i am dying and that he might be left an orphan? Will he stop loving me as his mother? Will he forgive me? ........ These are the questions that bother me so much anytime i think of letting the cat out of the bag.

Kev is growing so fast and sooner than later, he will need to know the truth. As his mother this sometimes makes me have sleepless nights. I would not want anyone other than me to tell him about it. For now i want him to have the best. All that i could not get at his age i try my best to provide. He is my reason for living and so my priority in this world.

I noted Kev has added weight. His skin is very smooth and i can finally see what a handsome young man i am bringing up. In addition, all teachers praised him of his discipline, his good work as the class prefect and his continued improved performance. I could not help cry last night as i thought so much of him and I. Its my hope that we shall remain as best of friends and with love even when he discovers the reason why i have to be on lifelong medication.

I hate this Ugly mark on my Chest

In 2009, i woke up one day with two pimples. By the second day they were all over my body. They were painful and i also had high fever. I dreaded how i looked. I would still go to the office since i never wanted to be alone in the house. My colleagues were very supportive and i remember how i would remove all my clothes and the office nurse would apply calamine over my whole body. This went on until i was healed and the ugly marks that were left on my body slowly faded with time. 

The week earlier i had attended to mama Prince who had herpes zoster(shingles). She had come to my office so sick and I did not know that if an adult or child has direct contact with the shingles rash and did not have chickenpox as a child or a chickenpox vaccine, they can develop chickenpox, not shingles. Its when i was going through some documents later that i learnt this.

All except one pimple faded with time.  The pimple that exists to date was the first to appear. The worst thing is that the pimple is larger now and its no longer looks like a pimple but something ugly. I was blessed with very smooth skin but this intruder sometimes makes me feel ugly. I sometimes want to wear a low neck dress with a small chain but the need to hide the ugly pimple overwhelms me. My unanswered question sometimes is why it had to appear on the chest. Its usually impossible to hide and you can imagine the look i give to anyone who dares ask me about it. Whenever i look at the mirror, its a constant reminder that i have HIV and not just that, that this virus called varicella-zoster is within me and has gone to hibernation and can appear any time my immunity goes down. 

Shingles is more common in people with a poor immune system (immune-suppression). Shingles commonly occurs in younger people who have HIV/AIDS or whose immune system is suppressed with treatment such as steroids or chemotherapy. Mercy lost her one eye when zoster struck her one side on the face. For Cyrus, it had struck on his right leg right at the ankle. Being a driver, it was so uncomfortable and he had to remove his shoes while on the road. Cyrus however denied having HIV and died sometimes back after an pneumonia attack. 

If you have never tested for HIV and shingles appears, its important to do a HIV test!

Tribute to Baby Victoria

Yesterday i happened to leave my phone in the office and this consequently led to my waking up late since i did not hear my usual alarm. I therefore did not make it to see mama Victor in hospital as i have been doing since she delivered baby Victoria on Sunday. I had visited her yesterday in the morning and i was confident that her and the baby would be released to go home in the course of the day.

Baby Victoria was born weighing 2.3 kgs, one month earlier than the scheduled date. That Sunday mother was so happy and she invited her friends to join in her joy. I hurried to be at the hospital before six pm and with me i carried some clothes for the baby. 

I found mother and baby and friends and my turn came to hold the baby. She was so lovely and since any time she breast fed she threw up, (the vomiting started soon after birth) i helped change the baby. We later left the hospital as it was getting late. The next morning i woke up and took another change of baby clothes. 

Baby Victoria was taken to the Nursery on the third day after she was found to have jaundice and dehydration. The vomiting had continued all this time and this is what led to her being dehydrated.  She was in the nursery until last night when the mother was informed that she had passed on. I received the news this morning. Baby Victoria had passed so soon. I couldn't help but cry.

To baby Victoria, i had grown to love you soon after you were born. Unknown to you, you had ignited the desire in me to have a baby girl. Just yesterday, i shared to the world how i felt over having yet another child as a mother. The clothes you looked so beautiful in were part of the baby clothes in my wardrobe that i have kept in faith that i shall have a baby girl someday. In fact they were the last bunch since i always find myself giving out the clothes to friends who give birth before me. Mercy who is now three was the first to have a share. How i would have wished to see you grow, start smiling and even go to school but since God loved you more, i have accepted his will. Two of my friends who have lost a baby have got twins in the consecutive  pregnancy. I pray that your mother shall be blessed again. Wherever you are i would like you to know that your mother has been very sad. She cried until her eyes were so swollen. On seeing her i felt tears too and was unable to go closer in case i cried in front of that big crowd that was there at the hospital. You shall remain in our hearts dearest, May your young soul rest in peace.

Do i really want another baby without the care of a daddy?

When HIV struck in 2006, my hopes for ever having another baby were crashed. I hated men onwards and having sex became history to me. Any man i met and felt he was going that direction too fast, i would go quiet and quit. This happens even today. I am one of those women that believe that sex should be the last thing to talk about in a relationship. When a man begins with it, then he can be assured that he isn't seeing me one more time. This i maybe corrected by many and i must admit it has been the cause of my being single since i refuse to entertain anyone who wants to bring my pants down.When i got my first job, news of new-borns were not so frequent within our circles. Infact, death news were more frequent. My heart would crash once i heard of passing on of a person i knew so well and their struggle with HIV. Some of these memories i hate to remember. 

In the month of April, my mentor Asunta gave birth to twins. This was the third time she was having a baby while i knew her personally. Hmmm the babies are lovely. She has beaten all the odds to have her family of five sons. She was not alone, other two friends have gotten babies and most adorable girls. One i just peeped at her inside a nursery this morning. She was born on Sunday.

For sometime now i have been having this overwhelming desire for a baby girl. Its eleven years since i held my newborn and now have forgotten even how to hold one. What i am not sure about is how to make sure she comes out a girl. When i talked to Asunta and read her diary, i could feel her desire for a baby girl. But she ended up giving up after the twin boys.

My mind wants a girl yes but i have to consider what i have gone through with Kev without a father. Is that what i want for my girl? Still thinking. I have goggled all ways to get a baby without having to go through sex and i found its not so expensive and with about 50K i would be able to conceive. Still not conclusive on this.

My mother desired to have girls, but she only managed to have me. I have not been happy alone but at least i have her. In my Kikuyu tradition, i should name my girl after my mum. This is what i want so much. I hold mum so dear to me and i really need to take care of her as she did to me.

So far, the only thing i am sure about is that i desire to have a baby girl. But how to get there is what i am not sure about. I know i will follow doctors instructions to the latter to ensure baby Wambui comes out free of HIV. I am waiting. It will be so exciting to feel pregnant. 

Hey there! isn't it good for a single girl to dream during the day at times?

Got a bed to sleep on? Count your blessings

Nairobi,Kenya has the largest slum in Africa, Kibera. Other slums include Mathare, Korogocho, Mukuru kwa Reuben and Kwa Njenga and Kiambiu among others. The fact is that the highest number of Nairobians live in these informal settlements. Its here that my first job took me and i appreciate very much for i would never have appreciated or counted my blessings. The living conditions here are deplorable. Families live in dilapidated houses and they still pay rent.But there is a group of people who cannot afford the monthly rent. I am not talking about street families. But young women who would wish to live a decent life but because of the harsh conditions in this city, cannot afford to rent a room. 

My work involves lots of referrals and recently i received a distress call from a friend. I could tell that my friend was touched by the story shared to him by a young woman who had gone to him for help. Since he could not help, he referred the young woman to me. 

Aisha is a mother of one. When she tested HIV positive while pregnant with her baby, her nightmare began. She is a muslim and HIV is not a subject that should be tolerated in her family. She was chased out of their family and did not have anywhere to go.

Aisha's daughter is HIV positive too as when she was chased of her only known home, she was not able to take good care of her daughter who in the process became HIV positive. Before going to see my friend, she had been kicked out of the only abode she had known since she was chased out of her home. This is an abode where many people sleep in one hall. The cost for sleeping here per night is Kshs 50 and this is the amount she had not paid for a week and when it accumulated to 350, the lard lord could not let her in. 

The hall has got no beds nor mattresses. Anyone who has to spend a night here has to carry his/her own clothes to sleep on. All have to spread their bedding and share space on the cold cemented floor which is a business both in day and night. Anyone is allowed to sleep here and therefore the hall is obviously not safe for women who are often raped by the men who rent the same sleeping space. The hall has no provision for a toilet or bathroom. The occupants have to sort themselves on these matters. For a woman who has a baby, the conditions are worse. Talk of food, clothes the basics and these women do not even own a bag to carry any of their belongings. 

Aisha and her daughter had been living in this kind of life for three months. She says the nights she spent here were the longest in her life. Its not possible to sleep here as you must guard yourself from being raped so you are forced to stay awake. This affects anything one tries to do during the day.

Today Aisha is finally in her own room. We were able to mobilize friends to pay her one month rent and some seed fund for business so she does not go back to this life. But Aisha left many other women here. Women like her who nobody seems to care about.

I count my blessing today for having my one roomed house where i am able to pay my own rent. Its in this house where i feel comfortable and can do anything i feel like without any fear of anything. Yes at least am assured i am secure and therefore i sleep like a small baby. But my heart goes out to these women and especially young mothers; that someday a well wisher shall rescue them just like we rescued Aisha.