Three-year-old Diya laughed delightfully as Sithara, her physician, tickled her. ‘Again,' she demanded, holding out her hands. As peals of her laughter rang out, the happiness and relief on her mother's face was palpable.
Two months ago, little Diya could not sit up or even lift her hands because myopathy had weakened her skeletal muscles. Today, she sits up on her mother's lap to play with toys, thanks to the efforts at pain management and continued physiotherapy.
Diya might need life-long support but the sooner the little one is introduced to a regular care routine, the better she will adapt to the situation.
“We need to make sure that she is kept in good spirits. Her mother needs continued emotional support and constant reassurances so that she is motivated enough to continue with Diya's daily care routine,” says P.G. Hariprasad, paediatrician at SAT Hospital.
SAT Hospital attends to some 400 to 500 out-patient (OP) cases in its paediatrics clinics daily. The paediatricians here regularly come across several children like Diya with life-threatening or chronic life-limiting conditions.
“Much as we would like to, we were unable to give enough care to these children because of the sheer number of OP cases. But today, we have a dedicated team of paediatricians, a neurologist, a physiotherapist, a medical social worker, a nurse and volunteers, to give more focussed care to the problems of these children and their families,” says Dr. Hariprasad, who is heading the newly set up once-a-week paediatric palliative care clinic at SAT hospital.
The new clinic has been set up in a small way and it currently takes care of children admitted to SAT with chronic and debilitating conditions like cerebral palsy and musculo-skeletal disorders.
In the last three months, 32 children have been enrolled into the weekly palliative clinic.
Palliative care for children is slightly different from that for adults because more than the use of morphine or pain medications, it involves evaluating and alleviating the physical, psychological, and social distress of children and taking care of their mind and spirit.
“A child may not be able to vocalise the stress he/she is going through. We use various internationally accepted scales to assess the child's social and intelligence quotient, intellectual, muscular and neuro-abilities. We have to understand the family's background, counsel them and give them emotional and financial support with the help of NGOs,” Dr. Hariprasad points out.
The clinic was started at SAT after two paediatricians were trained at Pallium India. The NGO is supporting the clinic with its own palliative care team, including community volunteers who will mobilise funds to offer rehabilitative support to children and their families.
Almost all children come from very distressing family backgrounds. “The child would often be the only child in the family. In many cases, the father would have deserted the mother as soon as they realised that the child is not normal.
The mother has to earn a living and often there's no one to care for the bed-ridden child,” says Babykkutty, a retired government official and a volunteer of Ebenezer Marthoma church, who is actively involved with the SAT clinic.
The palliative care team here says that emotionally, it is quite painful and draining, to deal with the situation of these children.
“The first time Babykkutty sir came to the clinic, he asked that he be spared from this activity. But then, we reminded him that we were the ones who could do something for these children and that we could give them a better quality of life,” Dr. Sithara says.