Help bring Palliative Care to Indonesia's children

Little Lala* was being lovingly attended to by her grandmother “Popo”, when the team from Rachel House - nurse Fibrya and community health worker Risma – recently called to their home to check up on this sweet little girl.

Lala is a lovely 13-year-old girl, who has been living with a serious illness from the day she was born. Since then her mother and her Popo have filled their modest home with love, affection and tenderness for Lala, devoting themselves to her care. Tragedy struck in 2010, however, when Lala’s mother passed away. With Lala’s father not in the picture beyond paying for the roof over Lala’s head, it fell to Popo to nurse and care for Lala. Nine years later, Popo continues to provide this care, love and support to Lala every minute of every day.

Lala was referred to Rachel House in 2018, when as a result of her illness she developed encephalopathy (brain damage). This encephalopathy makes it almost impossible for Lala to move her body by herself, or to make herself understood by anyone apart from Popo who, after a lifetime of caring for her, understands her soft sighs and slight indications.

During the visit, Fibrya and Risma begin by having a conversation with Popo, checking in on Lala’s condition since their last visit, and on any issues that may have been raised via text messages and calls. Popo mentions that Lala has been in pain. Given her inability to communicate, assessing Lala's pain can be a challenge. Nurse Fibrya conducts a gentle but thorough physical examination from head to toe, while constantly checking for even the smallest reaction - such as a slightly hand/finger movement and facial expression – that would indicate pain or discomfort.

While Fibrya examines Lala, Risma continues the conversation with Popo, discussing the more practical support that Lala and Popo may need. These can include a supply of milk and diapers, transportation assistance to specialist appointments (thanks to our generous donors), or simply offering a listening ear for Popo’s problems, and at times, connecting Popo with other service providers. Risma, now known to Lala and trusted by Popo, sometimes steps in as a respite caregiver for Lala, allowing Popo to run errands or even just to enjoy some time on her own.

Popo lamented that she often receives pitiful glances and comments from her neighbours, especially when she takes Lala out. Her reply that “Nothing is difficult and pitiful for me because we live together and I can shower Lala with unconditional love every day” reminds Fibrya and Risma the immense love that this grandmother has for Lala, and her incredible courage.

After a visit which lasts almost two hours, the Rachel House team packed up to leave for another patient visit that day. Lala’s pain has been identified and medications administered. Popo is secured in the knowledge that the Rachel House team can be contacted at any time if the problem persists. . The team says goodbye to Lala, knowing that she is in the fierce and loving care of her strongest protector, her Popo, and that they will see her again very soon.

*All names have been changed to protect the privacy of our patients and their carers.

*Photos by Maggy Horhoruw

Triya* was enjoying a big bowl of bakso (meatball soup) when nurse Ria from Rachel House recently visited her home in South Jakarta. Simply seeing Triya eating a full bowl of bakso like any other eight-year-old girl brought a smile to Ria’s face and to that of Triya’s grandmother. This is because it demonstrates that Triya’s appetite is returning and her condition is stabilizing after several worrying months for all who care for this precious little girl.

Triya has been living with a serious illness since she was born – an illness that has had a tragic impact on her entire family. In 2018 alone, she lost her father, her mother and her little brother to the same deadly disease. Luckily for Triya, however, she has an angelic grandmother who showers her with love and cares for her as best as she can.

When there is hope, there is a way

At first her grandmother feared that the illness, combined with the sadness of the tragic loss would be too much to bear for this little girl. “I thought Triya would never survive, she was so skinny, looking very pale and there seemed no hope,” her grandmother said.

To be the sole caregiver of a beloved granddaughter with a serious illness is not easy. “Most of the time I don’t have the money to pay for the transportation cost to get Triya to her specialist appointments. I place our hopes every month on my youngest son to support the expenses. But when we are out of money, I walk. No matter how far the distance is, I will keep walking and carry Triya on my back to get to the doctor. And I always find a way to pay for the expenses for her medication. Before her parents died, they asked me to take care of her. I have made a promise to them that I hold as a sacred responsibility. I will hold my promise until the end of my life,” Triya’s grandmother said.

Since Triya was admitted to Rachel House’s service five months ago, nurse Ria has been working tirelessly to stabilize Triya’s condition and to support her grandmother. “The first thing we needed to do was to address Triya’s malnutrition and her problems with swallowing, so she can start eating properly and to take her medicines,” said Ria. “We made sure that Triya’s grandmother always had access to the medicines and that Triya was taking these on a regular basis, which is essential for keeping her disease at bay. The focus on her care, and the partnership with Triya’s grandmother is now starting to make a real difference to Triya’s health and hopefully her prognosis.” said Ria.

The joy of Friendship

Once she gets over her initial shyness, Triya is bubbly little girl. She loves to play hide and seek and adores her Disney’s princess coloring.

Triya enjoys going to school and loves being with her friends.  However, due to a skin rash that has intensified due to her illness, she has been reluctant to go to school lately. She said her friends had become too frightened to play with her.

Nurse Ria supported Triya’s grandmother to address these problems by consulting with a skin specialist, and worked with the family to improve the hygiene conditions in their tiny home. On our most recent visit, Triya’s skin condition has shown significant improvement, and she is hopeful and so excited to be able to go back to school again soon.

Children like Triya, orphaned and left under the care often only by a grandmother, tells the devastating tale of many of Rachel House’s patients. Equipped with the clinical skills to support the child and family, and love in their hearts to care for the plight of these children, our nurses count their blessings for the faithful support and generosity of spirit of our supporters and donors. We thank you for walking this journey with us – so that every child can live with the joy and dignity that they deserve.

* pseudonym