The Program has an open door policy for patients from Manicaland, where there is going to be no recruitment criteria for a child to join the Program regardless of the age, race religion and socio economic status.
During the first contact information about the patient’s health and medical history is collected as well as contact details, family situation, current health care provider, etc. Also general measurements like head circumference, body weight, temperature are done by our nurse or doctor.
The first contact with patients occurs in different ways: Parents (of patients who are already in the Program) or people from the community tell us about a new child with hydrocephalus in their area. Medical staff from clinics and hospitals refer patients to the Hydrocephalus Program. And also due to mouth to mouth publicity, patients are waiting for our staff at Karanda hospital where we go weekly to for check ups and/or operations (shunt insertion or revision).
Treatment for hydrocephalus can be lifesaving and life sustaining. Early insertion of shunts is important to reduce pain and any other inconveniency related to hydrocephalus and to avoid brain damage. When necessary a child will be referred to hospital for a shunt insertion or revision. A successful shunt system allows an infant’s head size to become normal and relieves symptoms in older children and adults.
Lifelong follow up examinations are needed to evaluate changes in developmental, intellectual, neurological and physical impairments and to maintain proper functioning of a shunt system. After shunt insertion, the patient stays for 2 weeks in hospital. When the patient is released from hospital, we continue to monitor the progress of the patient with the 1-3-6 follow up system. The first follow up examination usually is scheduled 1 month after surgery. When the situation of the patient allows it the next follow up examination will be done 2 months later (is 3 months after surgery) and then 3 months later (is 6 months after surgery). After another 6 months (is 12 months after surgery) another examination will be done and then it will be done once a year. But the situation of the patient may ask for more regular follow up examinations.
All parents are given a booklet “Signs that your child’s Shunt is not working”. This booklet is to help the close family to understand all sorts of malfunctions of the shunt. Also measure tape is given to all parents and by now all of these parents know how to measure the head circumference of their child. Parents of new patients are taught as well.
Counselling is another important task. Communication between specialists, practitioners, family and school personnel (when a child is going to school) may often become complex and overwhelming to parents. We are helping the parents to understand the advised medical treatment, to follow-up on necessary referrals and to help financially for medical treatments. Parents are encouraged to organise support groups in their area. Because most of these families are extremely poor, other priorities for the family and child, like the necessity for food, blankets to keep warm, mental support, etc., will be identified and worked on as well.
Besides the parents any other person (like school teachers and health care providers) related to the patient will be involved to help them understand the child’s condition. Better awareness and education among health workers is going to lead to early diagnosis, better treatment and care methods to improve the quality of the patient’s life. To help these health workers another booklet is developed listing in detail all the things to watch for and record meant for clinics, village health worker, etc.