Contributors (SWACH): M/s Vinti Sharma, M/s Shiwani Anand, Mr PN Mohanty, Mr CS Madan [Print/ Download]
Case Study: Child with Neural Tube Defect
This case study of neural tube defect of lumbo scaral spina bifida with suspected microcephaly highlights how a poor family (mother educated) in a village can provide good care to their child with support from different stakeholders. The surgery has been done successfully. Prior to surgery, the child was well prepared through integrated care provided through a combination of home visits by ASHA and guidance through ongoing phone communication by SWACH team on child care and child development. It stresses the importance of ongoing support and guidance in early childhood development where the caregiver plays a very prominent role but this can be improved through coaching. A combination of guidance with sharing of photos and video clips can enhance the focus and increase the family participation. The continuing challenge is the small head which may be related to prematurity. His developmental assessment and continued measurement of head size would help to clarify the situation.
This male child was born to S from village Dalip Garh in district Ambala. Mother is 25 yrs old housewife with 10+2 education. Her husband is 26 years old. He has had 5 grade education and is a factory worker. He earns around INR 1500 P.M. and they live in a joint family. She became pregnant within 1 month of marriage and received ante natal care. She delivered a male child with low birth weight of 1900 grams at 37 weeks of gestation (small for gestation age) through normal vaginal delivery on 21st July 2016 by nurse at a private hospital. Breast feeding was initiated after seven hours of birth of child. At birth, child was reported with a tumor at back described by the family as ‘phoda’.
The case was reported by ASHA to SWACH on telephone. Since then, SWACH staff has provided ongoing support and guidance on phone. The child was registered by SWACH staff and an MCP card (mother child protection card) was prepared. Mother breast fed her son exclusively and kept the baby warm as advised by SWACH throughout the neonatal period. One day after birth, the baby was referred to PGIMER, Chandigarh for diagnosis and management of the defect. Doctors at PGIMER diagnosed the tumor as lumbosacral spina bifida and gave date of operation after three months. Spina bifida appeared like a shriveled large sac with no leakage or ulceration. The movements of lower limbs were normal and
there was no stiffness or floppiness of the lower limbs. The family reported normal response when they stroked the soles and pinched the ankles. Staff at PGI advised application of mercurochrome four times a day till it gets operated. A unique identification number was given to this case. This is done as a part of birth defect surveillance which helps SWACH to track down the case for finding out the status of the case and provide necessary guidance and support.
SWACH staff reminded the parents that the child should be handled very carefully so that the swelling does not get traumatized. SWACH team along with ASHA from the village were in regular contact with the family. Block Supervisor at SWACH did the regular follow up on phone and provided support and counseled the family as required. Exclusive breast feeding was supported, the mother was encouraged to do multi sensorial stimulation of the child and spend as much time with the child as she can. Block Supervisor from SWACH discussed the case with seniors at SWACH periodically and got guidance from them. An integrated approach was adopted as a part of continuum of care. Since this was a child with a neural tube defect and low birth weight, special sensitive care with a lot of attention on precision in the provision of care was given since it was anticipated that the child might be exposed to the ill effects of stress and trauma because of his medical conditions. Simple, ordinary and doable interventions were advised, agreement was reached on issues which family would implement, and the problems that the family encountered were solved on a day to day basis. Follow up was done to ensure that whatever was agreed upon was implemented. For example, hand washing before and after applying medicine on the spina bifida as advised by doctor at PGIMER. Family was given the phone number of the Block Supervisor to contact whenever the family needed to clarify doubts or when they encountered any difficulties in providing care to the child. The mother learnt sensitivity and responsiveness, she provided tactile visual auditory, and physical stimulation to the child and spent a lot of time talking to the child. Body 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. From 1900 gms at birth it improved to 2400 gms at one month of age , 3460 gms at two months of age and 4200 gms at three and half months of age. 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 of the village acted like an activist to guide and help the family to implement what was advised. Appropriate play and communication activities were communicated to the family on phone. Parents spent a lot of time with their baby, called him by his name slowly and gently, talked to the child, burped the baby after every feed, held the baby close to them as per advice, and practiced what SWACH staff advised. The family was helped by SWACH staff and by ASHA through phone conversation and through multiple home visits respectively.
Family was told to send pictures and video clips periodically through phone (What’s App) which they did. These were very useful in analyzing the nutritional and developmental status of the baby and providing appropriate guidance and support.
SWACH support through phone conversation, home visits by ASHA and medical care and advice by doctor at PGIMER helped the child and the family to prepare him for surgery. Operation was done on 2/11/16 at PGIMER, Chandigarh. During hospitalization, the family was contacted regularly by SWACH staff. Family was given full moral support and reassured that their child was getting the best possible care. They were also advised on feeding, play and communication since these measures would help the child in early recovery and discharge from the hospital. Family was advised on feeding and to keep him warm during his transition from hospital to home.
Head circumference was measured by ASHA. It was 32.5 cms at 15 days after birth and plotted on the WHO head circumference chart. At that time it was (-2sd). It was again measured at four months of age when surgery of spina bifida had already been done. It was 37.5 cms (-3sd) which points towards microcephaly. No other signs and symptoms of microcephaly are visible .Limb movements are normal and the child is under monitoring.
Now the child is four months old. Surgical site is completely healed and normal. He is exclusively on breastfeed and doing well. The family is very cooperative and the equation between SWACH and the family is very good. There is regular communication and emphasis is given on stimulating the child through age appropriate play and communication along with feeding. The developmental status and limb movements are regularly monitored by SWACH staff. Head size of the baby would be monitored. Further progress of the case would be reported in due course of time.
The child has to be on continued follow up. The issues of concern are undernutrition (weight is – 3Z) and low head circumference (-3Z). Age appropriate guidance is required to continue to focus on child stimulation through play and communication, feeding, protection through immunization and provision of treatment of any illnesses.