Aim of the Project
Provide comprehensive treatment including rehabilitation training to high risk infants with global developmental delay. This is a novel venture in the state as well as all over the country as a whole and is introduced as a part of the strategy of the Institute for the early detection and prevention of disabilities.
Developmental disabilities are a group of related chronic disorders of early onset that estimated to affect almost 10% of children. Global developmental delay (GDD) is a subset of developmental disabilities defined as significant delay in two or more of the following domains: gross/fine motor, speech/language, cognition, social/personal and activities of daily living .Global developmental delay describe a clinical presentation that has heterogeneous etiologies, and is associated with age specific deficits in adaptation and learning skills. The term global developmental delay is usually reserved to children below the age of 5 years whereas the term mental retardation and is usually applied to older children when IQ testing is reliable.
Children with GDD infancy suffer from many other associated problem which interfere with their normal thriving such as sucking and swallowing problem, feeding problem, epilepsies, recurrent respiratory infection, hyper amonimia and metabolic and endocrine dysfunction. Children are vulnerable to temperature variation and hence it is difficult to travel with the children to therapy centers especially if the parents are relying on a public transportation system. Nevertheless, if proper rehabilitation programs are followed with appropriate medications their overall out come by three years is good. The major cause of increased mortality in these children are due to recurrent respiratory infection, or complications related to epilepsy, or feeding problem which can be prevented if adequately treated and educated.
ICCONS has been providing comprehensive treatment and rehabilitation to children , adults and elderly with various developmental and acquired disabilities such as cerebral palsy, autism, mental retardation, global developmental delay , those with single and multiple congenital anomalies, post stroke, post traumatic and post infectious syndromes, Alzheimer’s disease and various other Non-Communicable Neurological Disorders that leads cognitive, language or motor disabilities. Presently the Institute at Shoranur, is providing inpatients services only to children above the age of 3 years since we have only bystander free ward system. The present project proposes it to be extended to children below the age of two years allowing the mother of the child with them as bye-standers and providing a reverse barrier nursing to these children. The success of the project can be evaluated and later can be extended to other Medical Institutions including Medical Colleges and Taluk Hospitals, as there are a large number of these type children in the community, because of prematurity, Obstetric complications, maternal diabetes and hypertension complicating pregnancy and complications various intra uterine infections. This will be an important step in reduction of infant mortality and morbidity as they come under the high risk infant group.
A. Infra structure and Man power
The 10 bed ward in the ground floor of the institute and 7 beds ICU will be used for the purpose. A qualified Pediatrician and two AMOs will be in charge of the ward for the time being and further strengthening will be done as the load of the Institution increase. Six trained Nurses and 6 ward assistants two cleaners are also required. The services will be 24 hours a day and admission will be with prior appointment against available beds. Emergency admission will be given to any patient under follow up from the institution or vacant beds are available. The child will be admitted to the ward or ICU depending on the nature and severity of the condition.
Systematic Pediatric and Neurological evaluation will be done in every case with proper documentation of the problem including video recording and monitoring will be done in order document, the reversibility achieved through the program. Each infant will be investigated with all parameters including neuro-radiological evaluation so that diagnosis is clinched and a protocol for the same will be prepared. The Protocol of the American Academy of Pediatrics with suitable modifications can be adopted for this.
C. Anti Barrier Nursing
Only mothers of the infant or Foster mothers will be allowed with the child. Male bystanders will not be allowed. Mothers of the infant should follow proper anti-barrier precautions while in the ward with infant .The mothers should be checked for infections, and treated appropriately, avoid pan chewing, or smoking, and use of infected food or drinks. They should use des possible mask provided from the hospital. Foot wears used outside are not allowed in the wards and ICU. Mothers are not allowed to use ward or premises to take food wash clothes which they have to use the provided specific refresh areas. Food for the mothers of the children will be provided from the hospital Dietary.
D. Treatment and Rehabilitation programs
A protocol of treatment is made for the management of the cases is made which include the treatment of the underlying cause , wherever this is possible ,control of infection with proper antibiotic selection, treatment of epilepsies with appropriate antiepileptic drug and supportive measures to keep the nutrition and correct associated metabolic changes and acid base balance.
The Rehabilitation team has to work on many aspects of a child with GDD. The most important aspects they have to work on is the swallowing ability as well good respiratory toilet and reducing the chances of recurrent respiratory infections and also keep the blood oxygenation level adequate so that further brain damage due to anoxia is reduced .Early Physiotherapy ,Speech therapy and Psychotherapy will be started simultaneously.
There are about 800 children with GDD currently registered in the two institutions of ICCONS. Moreover, though the exact prevalence is not known it is estimated that 1-3% of the child population is affected with the problem. Prematurity, low birth weight, Obstetric complication, maternal illness complicating pregnancies and neonatal epilepsies till continue to be the important cause of increasing mortality and morbidity in many developing countries.
The major burden of looking after the children is in the shoulders of the mothers. Since these disorders are not directly life compromising they remain in bedridden state for many years.
The project is funded from Health and family Welfare, NRHM, and Social Welfare Department of Govt. of Kerala ,as it is a novel step in the Health care program for thousands of ailing infants with GDD.