Have you ever wondered what it is like for Rachel House’s nurses to care for children with life-threatening illnesses in and around the metropolitan city of Jakarta? Then read this story by Dadan, one of Rachel House’s nurses, about his journey in bringing love and care to Teguh, a five-year-old boy living with HIV.
“The first time I visited Teguh at his home, he refused to speak, or even look at me. But of course I did not give up. I asked him to show me some of his stuffed animals and played with him until, eventually, he came around and allowed me to examine him.
Because Teguh’s immune system was severely compromised by the HIV infection, he constantly suffered from conditions such as diarrhea, fever, and coughing. He was also malnourished, and was often too weak to play as other children do. As his nurse, I made sure that, one by one, Teguh’s symptoms were managed and that he was comfortable at home. It was not easy, because Teguh had not started taking HIV medications yet. These medications, often called ARV or antiretroviral, work by keeping the HIV virus level in the body low. This in turn helps the body’s immune system recover and function as it should. However, for the ARV medications to be effective, they have to be taken in a disciplined manner, and that means every day at the exact same time. If that’s not happening, the virus will become resistant to the medication. Unfortunately for Teguh, the doctors did not want to prescribe the needed ARV medication for him because there was no one at home who could administer and monitor his medication.
Teguh’s mother had died when he was three years old and his father had abandoned him. He was living with his uncle, who was busy working and did not pay a lot of attention to him. Day in day out, Teguh spent most of his time alone in the house. Every now and then his grandfather, a garbage collector, would visit him after work and bring him something to eat. But mostly, Teguh just looked after himself.
As time passed, I came to be more than a nurse to Teguh. I became a friend. I would sometimes bring him his favourite cartoons, such as BoBoiBoy, Thomas the Tank Engine, and Power Rangers. Together with other Rachel House volunteers, we would keep him company and watch the cartoons with him.
Every time I was getting ready to leave, Teguh would get upset and angrily throw his car toy at me. For a child who was always on his own and never felt loved, he must have been very happy that there was someone in his life who spend time with him and played with him.
One day, Teguh told me that he wanted to see a real tiger. I realized after talking more about this with him, that he had never gone for an outing in his entire life. So we made plans to go to the zoo together, which got him really excited.
On the day itself, he woke up very early, showered, got dressed, and by 6 am, he was all ready to go! Together with a few of Rachel House’s volunteers, we drove to Taman Safari Zoo in Bogor. As it was a Saturday, the traffic was congested but not once did Teguh complain. It was the happiest I’ve ever seen him, and certainly the most talkative and energetic. “What kind of car is that?”, “Are we there yet?”, “How long before we get there?” The car was filled with joy and laughter.
It was a big day and a long journey to the zoo and back, but when I saw the sheer wonder and delight on Teguh’s face, I knew it was all worth it. He marveled at everything he saw. When he finally saw the tiger, he asked, “Uncle Dadan, why is the cat so big?!”
Teguh passed away less than two weeks after the trip to the zoo. A few of us went to his funeral. He was buried alongside his mother.
The sounds of his laughter and the memory of the joy on his face left a huge imprint on my heart, and in the hearts of many at Rachel House. Although I am sad that his life was so short, I am comforted by the knowledge that we brought him love and happiness during the brief time he was under our care – and this gives me courage and determination to continue my work as a pediatric palliative care nurse at Rachel House.”