Contributed by M/s Jyotsana Attri SWACH, PN Mohanty SWACH, CS Madan NHM Haryana, Suresh Dalpath NHM Haryana.
Case study of a child with birth defect (anal atresia)
This case study high lights (a) success in a child with low birth weight and serious birth defect (anal atresia). This success story emphasizes the importance of (a) good quality care that can be provided to a rural middle class family with low educational level (b) the value of adoption of a continuum of care approach that is integrated (c) the effective use of counselling the family through the use of phone and use of photo and video clips to reinforce guidance and (d) advice during transition between hospital and home. ASHA as a health care activist has played a dominant role in providing family support along the continuum of care.
The family lives in a village in district Yamuna Nagar that is about 10 km from the district headquarters. The mother is 25 years of age. The husband is a painter with a monthly income of about 10,000 Rs per month. The education of the parents is less than 5th grade. They live in a joint family of 11 members.
The child who is 3rd in birth order was delivered by C-section at 11.30 am on 2nd October, 2015 in the district hospital since it was breech and mother had developed premature labour. The baby was born pre term (34 weeks of gestation) and low birth weight (weight-2200 gms.). At the time of birth, the anal opening was not present. It was detected by the doctor who was called by the General Nurse Mid wife only when the baby did not pass stool after more than 24 hours of delivery and started vomiting (‘phate hue dudh ki tarha’). The whole family was shocked when they learnt that the baby was born without anal opening. They had never heard of such problem earlier. The grandmother was at the verge of fainting when she learnt about the problem. Mother was told that the baby had been referred to PGIMER (a tertiary hospital in Chandigarh) because of low level of haemoglobin (‘bache mein khoon ki kami ke kaaran PGI bheja gaya hai’).The baby was referred by the district hospital to PGIMER, Chandigarh located at a distance of nearly 100Kms from Yamunanagar for further management. He was transported by government ambulance free of cost. They reached PGIMER around evening. The baby was admitted there and a colostomy was done, the next morning.
In PGIMER, the baby was breast fed. He was discharged in a stable state. Doctors at PGIMER advised the family to come to PGIMER for follow up. The doctors at PGIMER advised the family that next operation for anal opening will be done later when the child weighs 5-6 Kgs and haemoglobin level is 9-10gm/dl.
SWACH staff was kept informed by the ASHA and the family. In turn SWACH staff focused on (a) critical importance of exclusive breast feeding (b) keeping the baby warm and (c) multi sensorial stimulation. Following discharge from the hospital, the family and ASHA were guided to look after the colostomy site and take precautions about the hygiene. SWACH staff maintained ongoing contact with the family and provided guidance and support for all concerns that the family had about the child. The family was advised to keep the baby warm and get immunizations in a timely manner. With the help of ASHA, weight of the child was recorded to ensure that the feeding was satisfactory. As a part of the continuum of care, the mother was also supported to maintain her health and remain happy so that she can take good care of herself and the child. The process of communication and counselling of the family through phone was built on the basis of trust, support to the family and guidance as per the needs of the family. The principle adopted was to focus on one or two issues at a time, reaching an agreement and then following up to solve any problems. For example, exclusively breast feed your baby and feed 12-14 times in the day and night and keep the baby warm. ASHA was motivated to follow up the baby locally. Once this was accomplished, whole body massage was advised. SWACH also reinforced the advice of PGIMER and explained them the benefits of timely follow up visits. The family was given a phone number to contact SWACH whenever needed. For example, family called SWACH when child was having fever, when the family found the child was fussy in feeding. Episodes of seasonal illnesses and family’s various concerns were addressed with minimal use of medications.
Mother Child Protection Card (MCPC) was also prepared at SWACH by the concerned Block Supervisor. Weight was measured regularly on weekly basis by the family and conveyed to SWACH on phone. The weight was plotted in the MCP card and growth was regularly monitored. Immunization of the child was done as per the national immunization schedule and recorded in the MCP card and the family was gently reminded for the next immunization whenever it was due. ASHA was told to adopt this child and she helped the family to implement the advice by SWACH staff relating to feeding, play and communication, prevention and treatment. Initially the child was followed every alternate day and frequency of follow up reduced to once in 15 days to once a month gradually when we found that the baby was progressing well.
Family was encouraged to send pictures and video clips periodically through phone which they did. These were very useful in analysing the nutritional and developmental status of the baby and providing appropriate guidance and support.
The family with the guidance and support from ASHA and SWACH were able to bring the child to such a level that met the requirement of the doctors at PGIMER for surgery. The readiness for surgery was a combined effort of family, ASHA, and SWACH. At the age of 5 month, surgery for anal opening was done and colostomy was closed at PGIMER.
While the family and the child were in PGIMER, SWACH remained in contact with the family and mother was advised to stay with the child. The role of play and communication was stressed which would facilitate for early recovery and discharge from the hospital. After discharge from the hospital the family was guided and supported for feeding and play and communication. The family had realized the advantages of SWACH support and guidance in upbringing their child.
Now the child is almost 15 months of age. His weight is 8.3 Kg. He is in the normal range. He tries to feed himself, speaks words like ami, baba, hello, ta…ta…, bye… bye…, etc. He recognizes all the family members. Mother said that now he is very naughty and stubborn (‘yeh bahut shararti aur ziddi ho gaya hai’). Ongoing communication of SWACH with the family has continued in terms of support and guidance to the family. They feel happy to share with SWACH whenever they see their child doing some new activity e.g. today our child tried to feed himself but has spilt a lot of food and messed up (‘aaj hamara bache ne khud khane ki koshish kari lekin kafi khana phalaya bahut accha laga’ ). They send pictures and video clips of their son periodically on their own.The family has all praises for SWACH. Father thanked the SWACH staff and told, “It is because of your help that our son is alright now. We cannot forget what you have done for us” ( Aaj aap ki wajah hamari bacha theek ho gaya hai. Ham aap ka yeh ahsan kabhi nahin bhulenge).
This is not an isolated case. There are many more children who are born premature, low birth weight and with birth defects. They require treatment and correction in the hospitals and health centers. An additional crucial requirement for survival thriving and transformation is improved home based care by the family. This was achieved through ongoing simple and concrete actions. This is a major challenge to be addressed.
