Help bring Palliative Care to Indonesia's children

The scorching heat and humidity this morning is causing a downpour of sweat down my forehead. I desperately wanted to wipe it off, but remembered the infection control protocol Nurse Erna drilled in my head on our car ride here.

"It's good thing that it is hot today. When it rains, it is almost impossible for us to access Lisa's house."  Erna explained as we walked carefully down the crowded narrow path towards Erna’s patient's home we are visiting today.

Lisa lives with her grandmother in one of the most densely populated areas in Jakarta.  To reach their house, we had to walk quite a distance through narrow alleys with no car access. When it rains, the sewer bubbles up quickly submerging the path in dirty muddy water.

Upon reaching the house, we could see Lisa's grandmother waiving at us from her front door, beaming with smiles. "Please come in." she said as she ushered us through the open door.

As the door closed behind us, we put our bags down to quickly don our PPE (personal protective equipment). Lisa’s grandmother is accustomed to this infection control practice since March, the beginning of the COVID-19 pandemic in Indonesia.

In the background, we could hear Lisa's grandmother murmured softly, "Lisa, Nurse Erna is here. You must be very happy now."

"I am very happy too! Can't wait to see you, Lisa” Erna called out. “I will be there in a minute. Just need to change my clothes first." But of course, we are not expecting a reply from Lisa.

Lisa is 15 years old with a body so small that she barely looks like a 10-year old girl. Lisa has been living with an illness that affects her immunity since she was a baby. Sadly, a virus that developed into a brain infection left her paralyzed from the neck down when she was 12.  Life for her and her grandmother, her sole caregiver since her mother died when she was 1, took a drastic turn then.

It was around then, in 2018, that Lisa was admitted to Rachel House for palliative care.

After wearing her PPE, nurse Erna rushed over to Lisa and knelt beside her.  She stroked Lisa's head gently as she greeted her.

"Grandma, has Lisa had irregular bowel movements these days?"  asked Erna, as she ran her hands over Lisa's stomach.

"Yes, she has for the past few days." Grandma answered.

"I brought some medicine for her constipation. Will give them to you after the examination." said Erna.

"Lisa, let's change the NGT (feeding tube) first, ok? You will be much more comfortable with a new one."  From the distance, I saw Erna swiftly changing Lisa's NGT tube. During our car ride here, Erna explained that it is very important for us to change the NGT tube regularly to prevent infection.

This pandemic is a real threat for children like Lisa, who needs regular medical attention but face great challenges in getting to the hospital, not to mention the heightened risks of getting infections during this pandemic. The presence of Rachel House nurses means children like Lisa have access to medical care at home, and their caregivers have access to 24/7 support when needed.

Again and again, I heard Lisa's grandmother posed her concerns and questions about Lisa’s condition, all of which were answered patiently and gently by Erna.

I am constantly in awe of our nurses, who devote themselves to provide the best care for the children. Amidst all the constantly changing landscape of risks in the community during this pandemic, I have never heard our nurses complain about their work.   

As a Communications member of the team at Rachel House, while this is not the first time I have visited our patients, it is my first since the pandemic. I can really feel the immense change! The donning of the full PPE, mask and face shield in patients’ homes, in extreme heat and often with little ventilation, was like being in a sauna for me. To see how Erna could focus intently on the care for not only Lisa, but also how she attended patiently and gently to all the questions posed by Lisa’s grandmother was totally beyond me.

At the end of the 30-minute visit (a limit put in place since the pandemic), Erna handed Lisa's medicines to her grandmother, along with clear instructions for the administering of the medicines. We also left some powdered milk and diapers for Lisa.

"Grandma, please don't forget to give the medicine to Lisa, and let me know later if her constipation is relieved with the medicine. Please call if you have questions or need help ok? "

"Thank you so much, Erna and Rachel House for helping us through these years. We are so grateful for your help."  said grandmother wholeheartedly.

Even though my body felt like it was in a steam bath under the PPE, I felt a soothing relief in my heart. It is moments like these that made me realize how much Rachel House’s support is needed by children like Lisa, and their caregivers.

After the visit ended, I walked out from the house with lighter steps; all the worries I had before the visit now evaporated, leaving only an incomparable spark of happiness in my heart.