Follow up of neonates with progressive hydrocephalus who were managed at the Royal Hospital for Sick Children

Background

This audit looked at the management and disabilities of neonates born between 1989–1999 who were admitted to Ward 2B at the Royal Hospital for Sick Children with hydrocephalus. Patients with spina bifida were excluded from this study.

Materials and methods

Names and hospital numbers of 135 patients who matched the inclusion criteria were obtained from the hospital ward database. Information on 105 of these patients was extracted from their medical records. Of these, insufficient statistics were available for 2 patients. Patient demographics, management and follow-up were studied and the subsequent data was analysed.

Results

103 of the 135 patients (76%) were included in the study. Of these, 29 (28%) had primary congenital hydrocephalus and 74 (72%) had hydrocephalus secondary to acquired obstruction. In the latter category, the majority were secondary to intraventricular haemorrhage. However, 5 were a result of meningitis, and 2 were due to other causes. 85% survived (16 died). About half of these patients (7–44%) died before their first birthday. Of the 103 patients, 22 (21%) did not require shunting for their hydrocephalus. 31 of the remaining 81 patients (38%) have had no shunt problems till date, and 6 have required elective revisions to peritoneal catheters only.

Detailed notes on follow up were not available for 8 of the patients as they were followed up elsewhere. Disabilities were common in the remaining population, with majority having learning difficulties. 41 (43%) have visual problems, 31 (33%) have epilepsy and 21 (22%) have some degree of cerebral palsy. However, 10 (11%) of these patients have had no problems and are attending mainstream schools, 5 (5%) have visual problems only, and another 5 (5%) have only mild learning difficulties.

Conclusion

Severe disabilities are common in this group of patients. Most have significant visual problems, a third have epilepsy, and 22% have some degree of cerebral palsy. Further studies on this cohort of patients need to be carried out to identify their needs in the community.