Today was Lauren’s birthday and we started the day singing for her before we boarded the bus for our day at the Pediatric Center of Excellence, a facility that caters to children who are HIV positive or at risk for HIV. Christi spent the morning providing consultation for children with speech-language delays with Pezo, their communication specialist. Students had an opportunity to rotate through stations to see the entire process that children go through when they come to the Center.
- The first stop is at Intake, where patients check-in
- Next is Triage, where they get their height, weight, head circumference, blood pressure etc. checked
- The next stop is Adherence and Counseling where the goal is to ensure that they are following the medication regimen prescribed and also counsel and disclose to them (when they are about age 10) as to why they have to take the medications: questions are asked about whether they are taking their medications regularly, at the right dosage, and medication is counted (since the last appointment) to check adherence
- Some children stop to see the nutritionist as needed
- Then the children see one of the physicians who may examine them and also discuss medications and adherence and recommend when they need to return
- A neurologist was also available and some kids with neurological symptoms saw him
- Finally, the child returned to Intake to schedule their next appointment and pick up their medications from the Pharmacy before leaving
I started at Intake with Jenn and we learned how they pull the files, track patients etc. The most important bits of information we learned were that patients line up starting as early as 5:00am, while the Center opens at 7:00am. Some of them come from quite some distance by bus. They each get a number and the Center takes them in on a first come first served basis. The Center averages seeing 50 patients per day, although some days they may see as many as 75. Patients who miss their appointment date (appointments are given only as dates, not times) are called to find out why and reschedule them.
Lauren and Jenn rotated through Triage and were asked to actively participate in measuring the height, weight etc. and recording them in their charts! My role after being at Intake was primarily to facilitate student rotations.
After lunch on the grass outside the building, students worked on preparing some more picture communication items as requested by the Center.
Then we set up for the training presentation on Hearing Screening. This definitely did not go as planned…the plan was to do the presentation and then screen the 5-6 children that they were having come in for the screening. However, first they did not have the projector they said they would have – no worries, Christi set up our own little travel projector and we were ready to go. We were told there may be about 25-30 participants, but it was well past the 2pm time scheduled for the presentation, so we started with just about 5 people attending. Luckily the rest of the large group of special education teachers from a local school showed up a little later. Finally 3 of the children were already there at 2pm and came into the room with their parents, so we had to improvise and decided to screen them first before the presentation. The students did a great job adapting to these unexpected changes, and going with the flow, explaining the screenings as we did them. Then we went through the presentation, screened a few more children at the end and answered questions.
The most heartbreaking story was the little 8-year-old that we screened last. She was ill in December and lost all her hearing in both ears. She had already been evaluated at Beit Cure Hospital and fit with a hearing aid on trial. It was heartbreaking to see this little girl who could speak, but who could not hear even with the strongest hearing aid, and who will be referred to a school for the Deaf to learn sign language. This is a child who in the US would be an ideal candidate for a cochlear implant and would likely be very successful with it because she already has acquired spoken language. Yet here these resources are not available. I have had this experience on previous trips to Zambia, but yet it breaks my heart and it is not any easier to deal with this on my fourth trip to Zambia.
A quick stop at the Lodge and excitement because we have wifi!!!!
We did have a fun evening as the students met their UNZA buddies and had a night of pizza and ice cream together. Christi and I joined them at the end of their meal and as usual the UNZA students had brought beautiful chitenges for all the girls and a great shirt for Connor. This year they had an additional gift for each of us – a Zambia coffee mug with the colors of the flag and supporting their football team! They are such a wonderful group of students and I will be sad to not have Muchanga and Nawa next year as they will be graduating soon.
I thought I got all the pairs, but unfortunately I missed taking a pic of Gabby and Meckson 😦
The students shared stories about their interactions with the physicians at the Center:
- The medications for HIV do have side effects, (sometimes serious) but the physicians are “trying to do something bigger and better” (i.e. decrease the prevalence of HIV in Zambia), and do what they can to deal with the side effects
- When the grandmother of one child told her she had no money to bring her back for the follow-up appointment, one physician gave her the money from her own purse
- One physician explained why they have HIV positive mothers still breastfeed their children saying “We would rather have a live HIV positive baby than a malnourished or dead HIV negative baby”
- One physician also explained why some children don’t know their age saying “They don’t see it as relevant. They see the child as a child and it grows up. Birthdays are not important in this culture”
They also shared what they learned about children understanding the condition:
- The Center discloses the reason to the children usually around the age of 10 years, starting with “do you know why you are taking these medicines?”.
- Usually parents are asked to disclose to the child, so that the child continues to trust their parents
- They are also asked “do you understand how you got it?” and the answer heard was “from my mother” – one girl started crying
- Difficult stories to hear, but the Center also has an adolescent support group so that children (after disclosure) can talk to other children who are further along the road of understanding why
They learned about HIV:
- Not taking the medication regularly may lead to having to increase the dosage for it to be effective
- Blood levels are checked regularly for the virus count in the blood
- Side effects of the medications include thrush, anemia, edema, etc.
- Good nutrition is an important aspect of the treatment protocol and a nutritionist counsels patients and families
- Children with HIV may tend to be smaller at birth and be shorter / smaller as they grow also
And the comment of the day today: “Coming in I was very naïve and thought that I could tell if a person was HIV positive; but they are the same as us; they can be healthy and do anything with the medications”
Of course the students also talked about how fun the time with their buddies was and they learned some things about Zambian culture.
- One student who cannot speak Tonga is looked down upon for not being able to speak her language.
- Family units in Zambia are getting more Westernized (less extended family involvement for example).
- The girls’ dorm at UNZA has up to eight girls sharing a room that is meant to be for two! Housing is a huge issue for UNZA students!
- If the parents of a child are from different tribes (there are about 73 in Zambia), the child always is considered to be in the father’s tribe, but may speak the language of the mother’s tribe because the mother is the caregiver who is with the child much more
SO – today was a day of much learning and we only have two more work days in Zambia!!!