“Sick children can’t be as active as normal children”. This was a myth I had always believed in, before I met Ponnu [name changed] an eight-year-old boy from Tamil Nadu who was diagnosed with chronic kidney diseases. I met Ponnu at the Government Paediatric OPD (Out Patient Department) in Trivandrum (See Avittam Thirunaal Hospital, Trivandrum). Ponnu usually wears large trousers and tight shirts; actually he doesn’t care about his outfits because Ponnu knows he doesn’t have too many.
During our initial interactions, we couldn’t see Ponnu’s face due to his mask which covered his tiny little face. This left us confused as we didn’t know if he was happy or not. Some children are blessed even in a crisis situation. For Ponnu, this blessing was his positive mind set. Ponnu was always happy with what he had. The innocent face made us smile even during the worst of times.
Chandrika [name changed], his mother, always seems very tired and sad when she came with Ponnu to the OPD. Dressed in sarees whose colour had faded, she looked older than her age too. Chandrika always had bus tickets in her hand for the T.A [Travel Allowance] as we provided a special fund to ensure Ponnu’s treatment continued and to decrease the vulnerability of the family.
Ponnu was under our care at Pallium India since 2017. He always tried to do things that made others forget about his condition and treat him as a normal child. He is one of the super stars for us in SAT like his “Vijay Anna” (Tamil film actor). The little guy made me realise that children were capable of enduring suffering. Yes, he knew he had limitations due to his illness and that he was going through a hard time.
After joining Pallium India, I was assigned as a social officer in the paediatric palliative care OP in the Government Paediatric Hospital, Trivandrum. Before the first day of my work, I was really anxious about dealing with children who would come with serious life threatening illness, as I didn’t have any previous experience. My multidisciplinary team comprised of a doctor, a nurse, a psychologist and me. I wanted to behave as a mature person in front of others; but all of these ‘wants’ unfortunately lasts only for a short time in front of children. While dealing with the little ones, we cannot control our own childishness. On that very first day, I realised the importance of palliative care in paediatrics, and it’s potential to make a huge impact in the lives of children and their family.
Ponnu is a good example of how children can offer mental strength to their parents, as most often parents become vulnerable both psychologically and physically, upon seeing the condition of their children. Poonu’s mother had taken care of him ever since his father had abandoned the family during a crisis situation.
The multidisciplinary palliative care team, especially the doctor in the team, plays an important role in making a child mentally strong in comparison to his role in making him physically better with medication. The doctor on our team is a senior palliative care physician and is one of the best examples to demonstrate how to create a rapport with children. Aware of her limitations in knowledge of paediatrics, she always tries to further her passion in paediatric palliative care. She repeatedly proves that the success of palliative care is not limited to knowledge only about the medicine but it’s also about the amount of love and care we provide to those innocent faces.
The psychologist plays a vital role in the team by allowing the children and their family ventilate their sorrows and feeling with effective counselling and helps address their concerns by employing different therapeutic interventions such as play therapy and art therapy.
Under general circumstances, a nurse’s primary responsibility is to provide medicines; but in a paediatric palliative paediatric OPD, our nurses do more than that. The nurse always tries to treat the children as per their wishes.
The physiotherapist teaches children the exercises needed for physical reconditioning. These exercises are also taught to the parents so that they can help their child practice them once they return home.
This is how a typical day would be in the government palliative care OPD of Pallium India, where Ponnu and others are pure beneficiaries who utilise the service provided by the palliative care team to improve their quality of life and alleviate their suffering. Within these boundaries, we have created a space for children and families who seek palliative care.
For example, Ponnu has the ability to sing, dance and act. We created a perfect atmosphere for Ponnu to practice those things which make him happy. His mother told us that he waited eagerly to visit us every week. As a social officer and a member of the palliative care team, this is the best acknowledgement for me. Each time he visited us, we ensured that we made good memories together.
These fun moments which we cherish so much also motivates us to do more and help heal the pain of many such “Ponnus”. The lack of awareness in child care may in fact violate the basic human rights of a child. Effectively identifying and addressing both the physical and mental needs of sick children is crucial for a child’s recovery and their overall well-being. Every child has the right to live happily and safe.
About the Author:
Mr Sibin Satheesh is Social Worker from Ernakulam, Kerala, India.
He worked at Pallium India as a Social Welfare Officer until recently and is currently working towards pursuing his higher studies in social work.
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