Little Didi* has been living with HIV and serious lung infections all his life – but thanks to the tireless support of nurse Rina and the team at Rachel House he can now breathe easy and focus on his homework. A story by Avril Delgado, who spent a few weeks of her summer holiday with Rachel House on July 2019.
Deep in the narrow backstreets of a densely populated North Jakarta area lives Didi, a shy and very special 11-year-old boy. At first glance, he looks just like any other child, especially if you can coax a smile from him.
However, look a little closer and you will notice how slight he is, so much smaller than other boys his age. Move a little closer and you will see a thin plastic tube running under his nose and behind his ears, connected to an oxygen tank at his side. Living with HIV since birth, and complicated by tuberculosis, Didi’s lungs are damaged to the point where he now struggles to breathe without the assistance of this essential external oxygen.
Step inside his humble home and you will see the walls are ringed with four-foot-tall oxygen tanks, some full and some empty, but all there to ensure Didi has enough oxygen to breathe. You’ll also notice the shelf of medications in his home, to keep the HIV at bay and manage the other serious complications he now lives with – including pulmonary hypertension and cardiovascular disease.
Didi shares this small house with his grandmother, his brother and his uncle. Both his parents have sadly passed away.
Despite all of these challenges, Didi is quick with a smile and generous with his laugh once he is comfortable with you. He loves to learn, play games like any other child his age.
“Nurse Rina, come take a look at my homework”
As soon as I entered Didi’s home together with nurse Rina – one of Rachel House’s senior nurses – his little face lit up.
All excited, he cried out “Nurse Rina, nurse Rina, come take a look at my homework!” proudly showing us his maths homework, while joking about his learning progress. Because of his condition, he hasn’t been able to attend school. But he remains curious and keen to learn. So Nurse Rina has been giving him maths homework, as well as helping him learn to read and write.
Nurse Rina always makes sure that Didi is absolutely comfortable and relaxed before starting her thorough medical examination. While keeping a conversation going with Didi, she listens carefully to his breathing and checks his vital signs to get a full update on his condition. It has been an uphill struggle to get Didi to take his medications daily and in a disciplined manner. As the years progress, Didi has begun to question why he should continue to take his medication. The rebel in most teenagers is appearing in him. Sometimes it takes many long negotiations and extensive explanations on the importance of the medications to keep the illness at bay to convince Didi. Sometimes this works. Other times, it takes a serious infection to convince him. Sadly.
Didi’s grandmother and uncle work very hard to put enough food on the family table and to keep a roof over the family’s head. His grandmother has a small food stand in their neighborhood, where she sells Indonesian snacks. However, whenever serious infection develops and Didi requires 24-hour care or hospitalization, the stall would close and the family will rely on only the measly income from Didi’s uncle.
Didi’s dependence on oxygen, not covered by the Government Insurance scheme, adds to the mountains of worries for his grandmother. Thankfully Rachel House donors have stepped in to ensure Didi has enough oxygen to breathe without this bankrupting the family.
A Shoulder of Support
Beyond the physical symptoms, addressing the emotional, social and psychological issues of someone living with a serious or life-limiting illness is central to palliative care. On every visit, nurse Rina spends time with Didi and his grandmother, discussing the issues and the challenges they face. The stigma around HIV remains strong in Indonesia and Nurse Rina is one of the very few people who Didi’s grandmother can speak to openly about the challenges and frustrations she faces every day.
On my visit, I caught a glimpse of tears when grandma told Nurse Rina about Didi’s condition and the challenges faced by the entire family. It was only then I understood the significant emotional burden on patients’ families, and the extent of impact of Rachel House’s service on people’s lives. Nurse Rina’s visit, her attentiveness, and openness was a soothing salve not only for Didi but also for his grandmother, giving her an outlet to share her worries and her fears and help make her frustrations disappear even for a moment.
As we left the house, Didi was busy with his new homework given by Nurse Rina; comfortable, relaxed and breathing normally. Grandmother had a smile on her face, thankful for the shoulder of support. I was moved by what I witnessed.
*Name has been changed for privacy