Help bring Palliative Care to Indonesia's children

In palliative care, we believe that a child's health is intricately intertwined with their family dynamics and environment. This is why it is imperative that we offer comprehensive care and assistance; not just medically, but emotionally, socially, and often, even financially.

However, what sets Billa's* parents apart is their remarkable and unwavering dignity amidst adversity. They exhibit a stoic determination to maintain their dignity and self-esteem against all the trials and tribulations. Refusing to be defined by their circumstances, they strive fiercely to provide the best possible care for their cherished daughter, even if it means going without food and medication for themselves.

Deeply moved by this and completely respecting their unwavering resolve, our nurses made it their mission to support this extraordinary family in every way possible.

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On one bright and sunny morning, our medical team comprising of nurse Eka, Dr. Vanessa, and accompanied by our community health worker, Hilda, made their way to Billa’s home. Their house (commonly known as a ‘rumah petak’ in Indonesia), with only one bedroom measuring about 3x4 meters, was nestled in a flood-prone area; surrounded by similar dwellings tightly packed together, where the sounds of their neighbors' voices easily permeate the thin walls, creating a symphony of daily life that echoed through Billa's humble rented home. As our team approached, they could hear the laughter of children and the faint sounds of the city in the background.

Billa, a resilient 6-year-old girl with an immunity-compromising illness, had recently been readmitted to Rachel House’s service after her health deteriorated.  She had previously been discharged from our service in 2021 in a stable condition and with weight showing on her plump pink cheeks. However, in the past almost 12 months, Billa had apparently not been taking her medication as her parents had not been able to take her to the hospital to renew the prescription. 

One thing worth noting about this family is that despite their financial and life struggles, they hesitate to ask for help.

Upon entering the house, we were greeted warmly by Billa’s parents. The family of five live in a tiny cramped space: Billa with her older brother and younger sister, and parents. Both her parents share the same illness that often render them very sick, and yet they continue to work tirelessly to provide for their children. Billa’s father works as a parking attendant, while her mother earns a meager income washing and ironing neighbors’ clothes.

During the visit, Ns. Eka pulled out a set of colored pencils (donated by our generous donors for our patients), at the sounds of delight from the children. It appears that the timing couldn’t have been better, as Billa’s brother, who is in elementary school, had a school assignment that required coloring; and he has been borrowing crayons from his friend. The joy on his face was unmistakable as he realized he now has his own set of colored pencils.

While Dr. Vanessa was busy conducting a physical examination for Billa, her little sister - who had been really shy at first - began to enthusiastically color on papers that were scattered on the floor, sitting comfortably on Hilda’s lap. Ns. Eka watched this scene with a smile and then turned to Billa’s mother and asked gently, “Why didn’t you tell us that your son needed colored pencils?” 

The mother blushed and replied softly, “He could borrow from a friend. I didn’t want to trouble you.” This quiet dignity and self-reliance is so characteristic of Billa’s family.

As our medical team was preparing to leave, Nurse Eka asked Billa’s mother, “What would Billa like next week? She mentioned she would like fried chicken. Should I bring some?”

The mother quickly responded, “No, thank you, Nurse. I’ve already bought some!”  Because despite their financial struggles, she and her husband always tried to fulfill her children's wishes on her own, not wanting to rely on external help. It was clear that the family’s pride and dignity were deeply ingrained, even in the face of all adversities.

The only direct request the mother had ever made was for diapers for Billa’s younger sister. Nurse Eka vividly remembers when the mother looked at her, not feeling sure to say, 

“Nurse, if you have any,” she had hesitated before continuing, “if you have them, may I request some diapers for Billa’s sister? Any size will do.”

And why wouldn't Nurse Eka help them? Even if the older and younger sisters are not our patients, there's something we have always known in palliative care: the impact of stress experienced by parents and siblings on a patient’s health. 

These are hidden struggles children face daily. They often absorb their parents' anxiety, which could hinder Billa’s recovery. That’s why our nurses always take the time to ask detailed questions about the family’s well-being: if they have eaten, how is Billa doing in school, and the parents’ work situation.

Raising three little kids is a significant challenge for both parents. Their financial difficulties and health issues add to their burden, but they never let it show to the children. In one heartfelt conversation between Ns. Eka and Billa’s mother, we learned that the family had been behind on their rental payment since 2022, accumulating a debt of IDR 6 million. 

Another financial worries we discovered by chance during one of our visits - a phone call that interrupted Billa’s physical examination coming from a loan shark. The parents were forced into borrowing money from these online lenders (at a very high interest rate) to pay for their grandfather's medical treatment in Bogor.

When we learned about this terrifying situation, we rallied support from one of our donors and managed to receive a generous support to help the family pay off the loan from the loan shark. The family was deeply grateful. 

Billa’s family’s quiet dignity and strength is deeply respected by everyone at Rachel House. They never complain about the hardships in their lives nor asked for help, working selflessly and tirelessly to provide for their children. We learned to support them while navigating their unwavering resolve to maintain their dignity and independence, by looking for signs of deprivation in the house. Billa's parents taught us the art of providing suppot to our patients and their families while preserving their dignity.

Rachel House remains committed to stand by their side, offering all our support while respecting their boundaries. Together, we continue to uphold the silent strength of families like Billa’s, ensuring they receive the care and support they need without ever compromising their dignity.

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And as each homecare session concludes, Ns. Eka warmly waves goodbye to Billa and feels her heart filled with the invaluable lessons learned within those humble walls. There, amidst the tender care provided by our nurses, Billa's parents stood tall and proud; they embody a quiet strength that moves us deeply, inspiring our unwavering commitment to support them in every way.

*name changed for privacy