26 November 2012

Uganda: Born With HIV, They Have Healthy Babies

Sunday Vision-Mukasa and Gloria were born with HIV and they used to get counselling at the same place. Eventually, they became friends and later fell in love.

The couple has been living positively and they have been blessed with two children - both of them HIV-negative. They shared their story with Gloria Nakajubi

David Kizito Mukasa and his wife Gloria Kawuma are one amazing couple that will make you believe that love can conquer our strongest fears.

They live in Mpererwe, a Kampala suburb, with their two children. Mukasa was born in 1987 in Mengo Hospital in Kampala. While growing up, he was frail and always asked his mother why he felt weak, yet his other siblings were strong.

His mother would tell him: "We are not all the same. It is God who determines our health."

Mukasa recalls that his parents were always fighting and as a child, he hated this. His mother would sometimes leave home after a disagreement and go to her brother's place in Makindye barracks, but she would come back after some time.

Life changes:

Dad had several mistresses. One day, while mum was away, he brought in another woman. When mum came back, dad rented a house in the neighbourhood for our step mother. By this time, mum had become sickly and after a few months, dad also became weak.

Our step mum stayed around taking care of dad until rent became a problem since dad was always bedridden. One day, we were thrown out of the house.

The children were distributed among relatives and my father went to his brother's place. Our mother went to live with her brother.

Mukasa playing with one of their children:

Dad died in 1993 and mum was brought in an ambulance for the burial. After that, life became hard as none of our relatives wanted to live with us anymore. Mum wanted to take us, but her brothers refused, saying they were only going to take care of her and not her children.

They forced her into the ambulance as she wept because she did not want to leave us behind. She never recovered until she died in 1997.

I stayed with my grandmother and although she really cared for me, there are incidents where she stigmatised me. For example, she would get furious if I used another cup apart from the one she had given me. She also did not like me playing outside without a shirt since I had a skin rash.

The most painful time was in 2004, when I was in S5. I would find it so hard to wake up for morning preps at school. My health later deteriorated and I was admitted at Mulago Hospital for six months.

I had body pain and cried a lot. The doctor had told me what I was suffering from and I remember telling my sister to let me die rather than suffer with injections.

I used to wonder why in the family of seven children it was only me who was HIV-positive. Sometimes I contemplated suicide. I was worried that my school friends would find out and I felt bad whenever they came to see me in hospital.

But with the counselling sessions at Baylor Uganda, I started accepting my condition and improved. When I was discharged, I made a decision to live positively. My brother and sister who took care of me in hospital were supportive.

After my A'level, I went on to do a short course in CISCO networking. I have been working with Straight Talk Uganda until recently. I am now out of work.

Gloria's story:

Born in 1989, in Kanyanya in Kampala district, Gloria never got to know her parents well as they died when she was just two years old. She was first told about her status in 2004, when her aunt took her to hospital for a test.

"I used to fall sick all the time. Since my aunt knew what had killed my parents, she decided to take me for an HIV test.

When they told me I was HIV-positive, I was not bothered because I did not know it was such a big deal at my age.

That same year, I started taking ARVs. It was in 2006 that I realised that having HIV was a serious issue that would keep me on medication for all my life.

Healthy babies:

Mukasa's face lights up every time he speaks about his two children.

The birth of their first born was a ray of hope.

"I had lost all hope and I always wondered whether I would ever be a father to HIV-negative children. I never want anyone to suffer when I am the root cause," he says.

Mukasa adds that from the time he realised that Gloria was pregnant, he was there to give her all the support she needed and sometimes they would go for antenatal visits together, so that in case she forgot something, he would be there to remind her.

Gloria with their second born:

"I always sought advice from the counsellors or I would bring the medication for her. We made sure that she gave birth in hospital and I would ensure that the medical personnel attending to her knew that she needed prevention of mother to child transmission to avoid any errors," he says.

"It is all about being open with the nurses or doctors who are going to help the mother, since they are also human and can forget that this particular mother needs extra attention. We also follow all the doctor's prescriptions as far as the baby's medication is concerned."

Living positively:

Mukasa says him and Gloria understand each other since they have the same story.

"Despite the hardships, especially now that I am out of work, we try to balance our meals and make sure we have fruits," Mukasa says.

"Disclosure has also helped us so much as people have learnt to accept us. We also feel free." (The couple actually keeps their medicine in the sitting room where any visitor will notice.) Mukasa adds that they try not to get stressed or over work themselves since that is not good for their health.

"We always keep a positive attitude to life, especially for our children. Now, more than ever, we have all reasons to have hope. With these little angels God has blessed us with, we know everything is going to be fine one day," the couple says.

Tough times:

Even with a positive attitude, money is the limiting factor. They need to take good care of themselves, which is not easy.

"Every time I take medicine and take long to eat, I get a stomach ache, but sometimes there is no money to buy food, yet we have to spare the little we have for the children," Gloria says.

"Sometimes, you feel tired of taking the medicine and some drugs can have a very bad scent. Sometimes when you sweat, all you smell is medicine. I do not like it when people, especially the neighbours, start backbiting me and reminding me of my situation," she adds.

Future plans:

Being young, they have dreams and Gloria dreams of starting up a restaurant, though she has not got sponsorship to study a catering course. She now does petty trading in snacks she prepares herself. Mukasa wants to start up an internet café, and with his CISCO skills, he can also repair computers.

How they met:

Mukasa used to see Gloria every time he went for the peer support activities organised at the Baylor clinic. They became friends and shared their challenges.

"There came a time when we would not wait for Baylor activities, but would meet and talk as friends. The bond grew stronger and I realised this girl was meant to be my wife," he says.

Gloria says before they started dating, she looked at Mukasa as a friend and big brother, who she could always confide in and was always there to listen. Mukasa and Gloria wedded last year in November with support from members and peers at the Baylor clinic.

They have two lovely children, Danniela and Dalton aged two years and seven months respectively and both of them are HIV-negative.

Control mother to child transmission:

Dr. Sabrina Kitaka, a senior lecturer, paediatrician and adolescent health specialist who works with Baylor Uganda, says currently there are more than 150,000 children below 15 years who are HIV-positive out of the 1.3 million HIV-positive Ugandans.

She adds that every day, 67 children are at risk of becoming infected with HIV during birth or in utero, as long as mother to child transmission is not eliminated.

"Virtual elimination of HIV is possible if mothers and fathers are tested and mothers are placed on ARVs during pregnancy," she says.

Kitaka says as anti-retroviral therapy becomes more widely available, more children continue to grow into adolescents and these adolescents will grow into adults.

"Adolescence is a challenging period whether adolescents are HIV-positive or negative. It is a time for experimentation, including becoming sexually active. Adolescents who are HIV-positive are encouraged to live positively with dignity, and not to further transmit the HIV virus," she says.

"Even as adolescents desire to have children of their own after they have become adults, they must be supported to ensure that they are part of the AIDS-free generation and bear HIV-negative children."

Your turn:

Do you think stigma against people living with HIV has reduced? Send us your comments on sundayxtra@newvision.co.ug. or a text on 8338. Type SUNDAYVISION, leave space insert your message and name and send

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