Keeping hope alive in HIV positive children

In June 2011, a seven-month-old baby girl (name withheld) was fighting for her life in a children’s ward at Kamuzu Central Hospital (KCH). Sitting by her bedside, her mother struggled to hold back her tears.

The girl is now three-years-old.

“She was given more than 12 drips, she was vomiting heavily and became so frail. She also had diarrhoea. I saw no hope of her survival,” recalls the girl’s mother.

Her condition fast deteriorated with time. Medical workers suggested that the baby be transferred to a clinic next door—the Baylor College of Medicine Abbott Fund Children’s Clinical Centre of Excellence in Malawi, in short Baylor Clinic.

“Within a short period of receiving treatment at Baylor, the baby started showing signs of life. Now, she is three years and five months old, stronger and goes to nursery school,” says the mother.

Opened in 2006, Baylor is, according to the clinic’s executive director Dr. Peter Kazembe, “Malawi’s only and biggest stand-alone paediatric HIV Clinic.”

It started because at that time, the life-prolonging antiretroviral drugs (ARVs) were only available for adults.

Baylor Clinics in Malawi and other countries are set in child-friendly environment.

No wonder the mother of this three-year-old girl says: “Whenever, I tell my daughter that we are going to the hospital, instead of frowning for fear of jabs, she jumps up and down in excitement and says: “Mum, I am going to play on the see-saw again!”

Outside the Lilongwe clinic is a children’s playground complete with toys and fun games such as see-saws, trampolines and slides.

As of end of last year, the clinic had cared for 2 887 children living with HIV. On average, it cares for 154 patients a day.

When the little girl arrives at the clinic, her mother hands over a health booklet to a medical worker. The little one is weighed. A brief question-and-answer session begins between the mother and the medical worker. She then shows a container where ARVs are kept.

As the mother is busy, the girl either is in the room or dashes outside to join fellow children who are also living positively with the virus. A transparent glass wall keeps the parents and children within sight of each other.

The clinic’s services have not only served lives from nearby Kawale, Mtandire and such other parts of Lilongwe City, but gets clients from outside the capital.

But the clinic is not just for the little ones. It also caters for teenagers. One such is a 19-year-old boy who opted for anonymity.

He was born with the virus and his parents died. His guardians did not tell him that he was living with the virus.

“I only knew my status when I attended one of the lessons on HIV and Aids at Baylor. The message that day made me realise I was living with the virus,” he says, adding a subsequent test confirmed his suspicion.

To cater for their teenagers’ needs, the clinic launched an initiative called ‘Teen Club’ to provide a peer support network and safe environment for adolescents. They meet one Saturday each month.

“We learn a lot like life skills, and we play various sporting activities. We also have our ARVs replenished, apart from undergoing various clinical services,” says the 19-year-old.

“Generally, we receive comprehensive medical care as well as participate in activities that address common challenges we face such as adhering to medication, dealing with stigma and discrimination, sexual and reproductive health, disclosure and mental health,” he adds.

There is also a hotline exclusively for the Baylor registered teen clients to access professional advice from home.

Realising that teenage years are the most active time in one’s life, Baylor Clinic also runs what is called Camp Hope.

Once in a year, the teens go on a five-day outdoor camping trip outside town to create opportunities for them to discover joy, confidence and a new world of possibilities.

“This helps them build connections and foster resilience,” says Linda Malilo, special projects and training coordinator at the clinic.

Baylor and Ministry of Health have expanded the Teen Club initiative to 29 sites in 19 districts now.

Baylor Clinic has also taken care of the challenge of some medical workers being reluctant to manage sick children.

Dr. Kazembe says diagnosis in children, particularly those below 12 months, is not straightforward.

“They don’t respond to treatment easily, even their dosage is cumbersome as it requires calculations based on the child’s weight. So, some medical workers would rather go for adult patients,” he said.

Similarly, the way children are tested for HIV at Baylor is not through the use of rapid test as is done with adults. Baylor uses a specialised machine called DNA PCR, which detects the actual viruses and not simply detecting presence of antibodies as the rapid test does.

In DNA PCR results come out after a month.

As a way of benefitting those children who cannot afford to go to Baylor Clinic in Lilongwe, the clinic has taken it upon itself to assist the Ministry of Health scale up nationally a comprehensive care of HIV infected children by improving capacity of government health workers.

Under the arrangement, Baylor workers (clinicians, nurses, data officers and counsellors) go for outreach missions in various health facilities for partnerships in direct patient care and host staff mentorship.

“For example, when at Salima District Hospital, the clinician would be partnered with a fellow clinician, a data officer with fellow data officer and so on. In that way, we are providing services but also imparting knowledge into the host institution’s workers,” indicates Kazembe.

The mentor provides cadre-to-cadre mentorship as well as health systems level mentorship and supervision in paediatric-focused curriculum on HIV, which includes topics on ART prescribing, TB, malnutrition, Kaposi Sarcoma and disclosure to adolescents.

Realising that a number of children acquire the virus while in their mother’s womb, the clinic also reaches out to pregnant women right in their localities.

“The women are then assigned a healthcare worker who takes them throughout the whole health system process and link them to the system until she delivers.

When the baby is born, it also gets attached to the Baylor Clinic where studies have shown that the children’s lives are prolonged.

The clinic has rolled out the newly introduced ARVs as set by the World Health Organisation.

“We have seamlessly transitioned our patients to the new Ministry of Health ARV treatment regime and though other clinics in the country may have had problems getting adequate supplies of the new regime, our pharmacy staff ensured that we were always adequately stocked with these essential drugs,” says Dr. Kazembe.