Musings of a lady with white coat on

Musings of a lady with white coat on

Submitted by alvin on Mon, 2016-05-02 12:51 With white coat on, detouring through hospital corridors, with tensed face and scattered patients’ case-sheets in my hand, I briskly walked towards our department. As health professionals we are used to walking around observing for ‘signs’ of various conditions, screening almost all individuals we see on our way. Consoling a patient party on the way, I happen to spot a fair young girl with wide eyed smile attracting my white coat towards her. This is a bit unusual with children since they are smart enough to predict an injection right into their buttocks once they spot someone in medical attire. I walked towards her anticipating her smiling stare. I stood in front of her like a rock with extended neck as she continued. I bent down to greet her asking her name and guess what. No reply she only smiled fisting her right hand. I repeated and the only answer she gave me was her incandescent smile! Her parents mediated encouraging her to answer me saying ‘Shona’. While her parents did her hospital formalities I informally observed her gestures. She constantly glared at people or things without blinking for minutes! With some repeated finger and hand movements, she kept on clenching her teeth. On discussing her condition with her parents and my staff I got to know it was her follow up visit and that she had a condition called Rett Syndrome which is a rare genetic postnatal neurological disorder of the brain that almost exclusively affects females. Genetically, Rett syndrome is caused by mutations in the gene MECP2 (methyl CpG binding protein 2) located on the X chromosome. Most babies follow normal developmental pattern up to 6 months of age. However, some signs like decreased diameter of head, seizures, hand wringing, loss of eye contact, decrease in weight, drooling, decrease muscle tone, lack of social interaction, irregular sensations, breath holding, deformities et cetera start developing eventually. As a healthcare professional, I believe in working in a team to provide utmost care to patients which I feel is their right. We assessed her and got our goals set to work on. Rehabilitation is a taxing stream that requires participation from family and society of the individual, besides health care providers. Team of rehabilitation includes Physiotherapist, Occupational therapist, Speech therapist, Prosthetists and Orthotists, rehabilitation nurse, vocational trainer, psychologist, social worker, special educators. We used various forms of therapy like play, sensory integration, challenging her functions, task specific approach, relearning and music therapy along with her balance, joint and muscle function. As described by her parents they started physiotherapy at the age of three when her mother realised that she has not attained her normal milestones. Since then she has witnessed improved interaction, development of balance and improvement with walking. “She is not able to do absolutely anything, right from getting her out of bed in the morning to putting her back to sleep; we have to do practically everything for her. She does the required therapy during her therapy sessions and I continue it at home everyday without fail. She loves music and animals. She smiles at people. I see a ray of hope each time she stands with our help and tries to put forward her tiny steps,’’ says her mother. Usually, we advise patients to get their kids to paediatric physiotherapy setups and ask their parents to follow up at home. Depending on intervention and improvements accordingly time is adjusted. Education through ‘Special schools’ is a good choice to involve peers, learn and promote independence. Vocational rehabilitation is any stream that facilitates individualism. Attitude of people towards social acceptance of population with special needs requires to be changed which will only start once we start accepting them equally. India has adopted legislative measures to ensure justice to the differently able population. These include: The Person with Disabilities Act, 1995; The Mental Health Act, 1987; The Rehabilitation Council of India, 1992; The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities Act, 1999. We, as responsible citizens, need to take small steps to ensure social integration and better health! Because, it’s just not rehabilitation, it’s reliving! About the author Prachi Kerkar works as an Associate - Center for Health and Development, Mangaluru. She is also a physiotherapist with postgraduation in public health. An avid blogger and traveller, Prachi is a foodie and writes poems.