In September of last year, I met Catherine. I can’t believe it’s been that long. Coco, a Dutch volunteer whose father, Peter, helps us with the Fort Portal project, had just arrived. I took her to the shopping center in Entebbe, to buy a sim card for cellular data while in Uganda.
At the door of Airtel, we discovered a girl who looked to be about six or seven, dressed elegantly in off-white (one of those frilly dresses that Ugandans put on their children to attend mass). She was crying, and touching her legs as if they were really hurting her. Despite her princess dress, she looked very neglected, and malnourished.
I tried talking to her, asking why she was crying, and alone. But it wasn’t easy; she didn’t speak English, only the native Luganda (and despite the years that I’ve lived here, I still don’t know the language). I asked her what was wrong, and she told me by pointing to her legs. They were terribly swollen. And I was terribly worried.
I asked her if she was alone but couldn’t understand her response. There were several people nearby and I asked if they had seen someone with her. They told me she had been with a man. I waited about 10 minutes, then prepared to take her to the hospital. At that moment, a man about my age appeared, claiming to be her father. Angry with him for leaving her alone at the door of a store, I definitely had an edge in my voice when I spoke to him. I am not proud of this, but I couldn’t believe a child in such pain was left alone.
He told me that they had just come from the hospital. Since she was in so much pain, he left her there while he went to buy something to eat. What he had returned with were some muffins, nothing that looked good for a malnourished child.
The man told me that he had taken her to the Grade B public hospital in Entebbe, and that from there they had advised him to go to Mulago Hospital’s malnutrition unit as soon as possible. They were going to go by public transport, which in Uganda means a van (matatu) absolutely packed with people, that stops every two to three kilometers to pick up more passengers. It then arrives in Kampala, in an area called “taxi park,” which has more matatus per square meter than you could possibly imagine. From there, they were going to take a boda boda (motorcycle taxi) to get to the hospital. This long, complicated, bumpy journey was definitely not what this poor child needed, so I offered to take them to the clinic where our children go, to do some tests and be seen by a doctor we trust. We would pay the expenses. I told the man that the girl simply could not go by public transport as she was.
On the way, I asked him more about the child: Her name was Catherine and she was nine years old. Shortly after she was born, her mother abandoned them and left her with the grandmother. Two months ago, the grandmother called the man, saying that the girl was sick and asking him to take her to the doctor. He picked her up and took her to the doctor in town, but she didn’t get better with treatment. So he brought her to Entebbe, which is where he lives. He showed me a photo of how the girl had been only a few months ago. She had lost a great deal of weight since then.
We arrived at Emmanuel Clinic. Peter, a very professional and kind nurse, who also helps us at Malayaka House, brought Catherine to the doctors. They performed all the necessary tests. The swollen legs seemed to indicate something in the liver or kidneys.
After several hours and lots of tests, Peter called me. Catherine had tested positive for HIV, and further tests indicated kidney and liver failure. They immediately placed her in treatment, and both the girl and her father spent the night at the clinic.
The father was very upset. He was unaware that the girl had HIV, and subsequently worried about himself, as well. Fortunately, his test came back negative.
In the morning, Robert, Coco, and I had to go to Fort Portal. Peter called me at noon, explaining that they had given Catherine IVs and treatment but that the doctors advised transferring her to the Mildmay hospital, which specializes in patients with HIV and AIDS.
So we did. I asked Auntie Winnie to arrange transportation to Mildmay with our driver, and the child was rushed to the hospital. That evening, Winnie called to say that she had spoken with the father and that Catherine was in treatment.
The next morning, Winnie called me very early. Catherine had died during the night.
I don’t know how to explain what I felt at that moment. Shame, a lot of shame, for sure. And I guess anger. Catherine had died because no one had been able to identify that she was HIV positive. Surely her mother didn’t know that she was also HIV positive. She gave birth, breastfed, and passed the virus to her, unknowingly. And then she abandoned her. I want to think that the grandmother did her best to care for Catherine, and that she loved her very much. Her father also seemed to be a good man. But ignorance of the disease made her become progressively sicker. If someone, anyone, had ever given her a test, during the nine years of her life, they would have known. Catherine could have been treated with antiretrovirals, and she would still be here, today.
I think of Catherine often. From the moment she died, I began wondering what we could do at Malayaka House, and in our community, to help children in the same situation. Children who are positive, but due to their situation of poverty, in which every day is about working to survive, the parents simply never know. These children do not receive treatment, and they end up as poor Catherine did.
After speaking with Jackie, our social worker, and Robert, we formulated a plan. This year, when the dentists visited, we planned to also offer the local children who come for dental care, an HIV test. For those who tested positive, we would help them access the medicine to stay healthy, and alive. In Uganda, treatment for HIV or AIDS is subsidized by the government.
But with this global pandemic situation, we have neither dentists nor tests…so we are starting with a slightly different project.
With the help of local leaders, Jackie has identified six families with children with HIV who are already in treatment. Antiretrovirals prevent HIV from turning into AIDS, so they are extremely important. But these are very strong medicines, so diet is equally important.
In general, their mothers are doing everything possible to try to get them ahead, but their economic and social situation does not allow them to provide the balanced diet they need.
Sometimes, the mothers also have HIV, or even AIDS. In addition to taking care of themselves, they have to take care of their children, with the little strength they have left. They are mothers who try, but who do not always succeed.
We want to help these mothers so that they are able to give their children a nutritious, balanced diet that allows them to carry the disease without serious consequences. We started the program in September, and in just two months, the results are promising. The children are gaining weight, and you can see a change in their faces; brighter eyes, smiles, and a more energetic way about them, overall.
We have created this project in honor of you, Catherine. You will forever remain in my memory. I only knew you for a few hours, but I will never forget your face. Thank you for inspiring us to help other children like you, little one.
~Bea – Malayaka House coordinator in Uganda