​What kinds of symptoms do patients experience before receiving treatment?

Families usually notice this condition with their child as their head grows large. These children do not reach normal developmental milestones and become unable to hold their head up, sit on their own, or talk. Some children become very irritable and become unable to suck and swallow so getting enough nutrition becomes difficult.

​What is the impact on patients’ lives of living with these conditions?

Children living with hydrocephaly are living with some form of brain damage that progresses as they get older. This damage will prevent them from developing on a normal trajectory. They have trouble eating, being able to sit, stand and communicate. Often they develop seizures and often experience pain and irritability. If it remains untreated, this condition will lead to death.

What cultural or regional factors affect the treatment of these conditions?

There is a lot of fear and stigma toward these patients as their heads grow large. Families with children who have hydrocephalus have trouble finding caregivers and support because of this fear. Also it is a financial burden to care for these children because of medication for seizures and the extra care they require as they grow older.

What does the treatment process look like?

The treatment process involves a surgery to stop the extra fluid in the brain from accumulating and putting pressure on the brain. This is done by making a hole in part of the brain to drain the liquid (ETV). The patient usually spends one or two nights in the hospital and then goes home with a tiny incision in their head and abdomen.

What is the impact of this treatment on the patient’s life?

This treatment is the only thing that will save the patient’s life. This treatment will prevent further brain damage. If it is caught early it allows the child to grow and develop fully. If it is caught late, the patient can receive therapy to assist them to overcome the developmental difficulties caused by the damage already done to their brain.

What potential side effects or risks come with this treatment?

The main complication caused by this surgery is simply that is does not work. In this case the child is given another surgery and a shunt is placed.

How accessible is treatment in the area? What is the typical journey like for a patient to receive care?

There is only one hospital in the country that performs surgeries for children with hydrocephaly. This hospital is in Port au Prince, Haiti. Children that live in the North or South of the country have to travel very far for clinic visits and surgery. This requires spending all day or several days on public transport to reach the hospital.

What are the alternatives to this treatment?

There are no current alternatives this treatment. If the brain damage is too far advanced then palliative care to treat the child’s pain and support the family is the only other option.