Sunday, 1 March 2015

Princess Kasune: A new chapter of Hope

PRINCESS and David with their son.

Princess Kasune Zulu is one of the most influential HIV/AIDS campaigners with a global platform through speaking engagements and a telling book about her own life. Two months ago, Princess, who is HIV-positive, herself, gave birth to a baby boy. She shared her experience as a new mother with JACK ZIMBA via telephone from her home in Chicago, United States of America.

IT did not matter that the telephone call was across continents, Princess sounded the same way she has always - bubbly and giggly.
Any reference to her misfortune of contracting HIV at a young age and losing both parents, two siblings and a husband to the disease still receives the same response like a recorded message: “I’m forever the positive one. I want to live a life full of joy.”
The 39-year-old has such a positive attitude about life, she makes HIV/AIDS seem lighter.
But it is her own openness and frankness that gives her away, bringing out some realism out of her about her status.
“Living positive is not the same as being negative,” she says as if to moderate her own positive-living talk which she goes on and on about.
But being HIV-positive has not stopped Princess from living her dream. And although “Princess” is her given name and not her title, Princess has lived life like a royal, rubbing shoulders with some of the world’s most powerful leaders, including US President George W. Bush. He once kissed Princess on both cheeks at the White House, a gesture that would be replicated by late President Levy Mwanawasa.
Over eight years ago, Princess met an American man who, despite him being HIV-negative, fell in love with her and insisted on marrying her.
Although she dropped out of school, she completed a double degree in divinity and non-for-profit management at a Chicago university last May.
She has a book to her name, Warrior Princess, and remarkable physical beauty.
But even the Warrior Princess has to admit that becoming a mother again, especially at her age, was pushing her luck a little bit too far. Albeit, Princess has always mentioned her desire to have 10 children.
Princess’ husband, David Schoefernacker, on the other hand, was not very keen on having a child.
“He wasn’t super interested,” is how Princess puts it. “He always took my two daughters Joy and Faith as his own children.”
Joy, 20, and Faith, 18, were born from Princess’s first marriage. (Princess was only 17 when she got married to a man 23 years her senior).
Princess thinks one of the reasons for David’s reluctance to have a biological child was driven by culture. (Unlike in the African culture, there is less pressure for a married couple to have a child in the West).
“But I always thought it would be nice for him to experience his own biological child,” she says.
Princess says David always cared more about her health and did not want to do anything that would comprise it.
In the end, however, it was Princess’ strong persuasive character that prevailed. She says she was encouraged by new scientific developments that gave discordant couples a chance to have a child without much risk of infecting the uninfected partner or the unborn child.
Besides, Princess had been enjoying good health for some years. She attributes that to her strict adherence to anti-retroviral treatment (ART).
When the couple visited Northwestern Memorial Hospital in Chicago, doctors gave them three options to have a baby, including artificial insemination, where Princess would use a syringe to deposit semen from her husband.
The other option was for the couple to have unprotected sex if it was determined that Princess’ viral load was very low and that her CD4 count was high.
Viral load is the measure of the level of HIV in the body. It is measured as the number of copies of HIV-1 per milliliter of blood plasma (copies/mL).
According to the US Department of Health and Human Services, the lowest levels of detectable viral load are about 40-75 copies/mL. The highest measure can be over 500,000 copies/mL.
Princess’ viral load had remained undetectable since 2002, meaning it was very low.
Research has shown that effective ART reduces the risk of infection for discordant couples.
And Manasseh Phiri, who is a leading HIV/AIDS campaigner, says society should not frown upon HIV-positive women who decide to fall pregnant because medical science now allows such women to have children.
“The most important thing is for an HIV-positive woman in a discordant relationship to get advice on how to get pregnant. There is nothing wrong with that,” he says.
Dr Phiri emphasises that before deciding to have a child, discordant couples should involve an HIV specialist and obstetrician to ensure that risks of infection are minimised.
He also advises that in a case where a discordant couple wants to have a child through unprotected sex, they should meet when the woman is fertile. This, he says, reduces the number of times they have to meet before conception can take place, thereby reducing the chances of infection.
But still, the idea of having unprotected sex with her husband baffled Princess. Her immediate reaction to the suggestion was: “Oh no, I can’t do this!”
She is full of caution even just talking about it.
“I don’t want to come out as someone who encourages people to have unprotected sex,” she says.
The third option was for the couple to have unprotected sex but with her husband undergoing post-exposure prophylaxis (PEP) in order to minimise chances of infection.
PEP is a short-term antiretroviral treatment that reduces the likelihood of HIV infection after potential exposure, either occupationally or through sexual intercourse.
Princess refuses to disclose which method she and her husband used.
“I don’t want people to say ‘Princess did this, so I can also do this’,” she says.
She insists each method has to be determined and approved by doctors.
But the risk of HIV infection for her husband and unborn child was not the only challenge facing the couple.
Doctors had told Princess that because of her age, there was possibility of her child being born with Down syndrome.
She was also told not to keep her hopes of falling pregnant very high considering her age. In fact, doctors had given her between six months and one year to conceive.
But Princess was determined to have a baby.
“I’m an African woman, I’m gonna conceive very quickly,” she had joked with her doctors.
True to her word, about two weeks later, Princess was expecting. She describes her conception as a miracle.
David was shocked when she broke the news to him. She says her husband expressed mixed feelings.
Her two daughters were all the less enchanted by the news. Their initial reaction was: “Mummy how could you fall pregnant at your age, you’re embarrassing us?”
On December 13, Princess gave birth to Kulangila David Schoefernacker after two hours of labour. Kulangila is a Lenje word meaning hope.
“I had a normal vaginal delivery because as an African woman, I wanted to fully experience child birth,” says Princess.
She also refused to use a pain relief drug called Epidural block. Epidural is the most common type of pain relief used during labour and delivery in the US. The drug is injected in the lower back during delivery.
Halfway through labour, however, Princess found herself calling for the pain-relieving drug.
“I had prayed to God for a less painful delivery, but hey, giving birth is giving birth,” she says.
Now about two months old, Kulangila is said to have bonded with his father and siblings. 
“I’m looking forward to being spoiled by him,” says Princess.
She, however, regrets that she is not able to breastfeed him because of her status.
“I miss breastfeeding. I think it’s a great time to bond with your child,” she says.
Princess has also slowed down in her travels and speaking engagements. She now devotes much of her time to humanitarian work in Chibombo district where her village is, through an organisation she founded called Fountain of Life.
The organisation is currently trying to raise about US$217,000 dollars to build a state-of-the-art maternity clinic in Chibombo. About US$100,000 has already been raised for the clinic, which is at window level.
“We have also received donations worth US$350,000 dollars from a medical company in the US. Once the clinic is completed in 2016, it will be one of its kind and a great gift for the expecting mothers and unborn children in the community,” she says.
“Having had a great delivery and best facilities at Northwestern Hospital in Chicago has ignited in me more passion to raise support and funds to build and upgrade as many clinics and maternity wards in Chibombo as possible,” says Princess, who also has political ambitions.
Asked if she is worried that she would not see her son grow into adulthood, Princess said she was still happy that there were people who would take good care of him once she was gone.
And she does not rule out having a fourth child. Call her crazy and she won’t be offended.
Princess speaks highly of her mother-in-law, Linda Schoefernacker, who she says has been very supportive of her.
When Linda heard her son was marrying a woman who was HIV-positive eight years ago, her response was: “Well, if she can take care of herself, she can live long. I see people who die of obesity here in American.”
On December 1 last year, Princess tweeted:
“World AIDS Day - This Dec marks likely 20years of living with HIV (with great if not perfect health) and 17 years of knowing my positive status. All I can say, God has been good to me and am grateful. My ‎Speaking Event - Northwestern Hospital today at noon downtown Chicago, to medical students. To my fellow longtime survivors and those just diagnosed, let’s keep the faith and hope.”
No doubt Princess’ story could have ended a long time ago and with the same sad ending repeated in many lives across the African continent. But this is one story that seems to have many chapters and this one has just begun.

This article was published in the Zambia Daily Mail on March 1, 2015

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