Neurosurgical input at pre-natal counselling for parents of babies with Spina bifida

Abstract

Prenatal counselling can be helpful to parents in making a decision with regard to continuation of the pregnancy or to help prepare for the birth and the future life of a child with Spina bifida. We aimed to assess the effectiveness of our specialist neuro counselling sessions and to highlight areas that could be improved upon. This was in the form of a questionnaire given to parents, who had been through the counselling and continued with their pregnancy.

The areas highlighted for improvement were more explicit information about urinary catheterisation, the need for admission to the special care baby unit (SCBU) and the need for an information leaflet on Spina bifida.

Keywords::

• ante-natal
• counselling
• myelomeningocele
• spina bifida

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Appendix

Questionnaire

1. Parental age, gestational age at diagnosis, medical professional who first suggested diagnosis (where?), was any initial clinical information given at that time?

2. Have you ever heard of Spina bifida before this? How much did you know? Did you have any previous experience with disabled children/Spina bifida?

3. What was the situation in which you were first told that something might be wrong?

a. What was your initial reaction? How did you feel?

b. Did you understand what was being said?

c. How could this initial consultation have been improved?

d. What happened next?

4. When you were referred for counselling with the specialist team what were you most keen to gain? (i.e. decision on continuation of pregnancy, extent of disability etc).

a. Did the counselling session affect your decision on whether to continue with the pregnancy or not?

b. Do you feel you were persuaded to make a decision either way?

c. Were you given enough information to prepare for what lay ahead eg disability, surgery, future problems?

d. Do you remember being offered to be seen again if required during the pregnancy?

e. In hindsight, is there anything else you would have liked to have known at the time?

5. What extra information were you given at the counselling session? Was this helpful? How did it make you feel with regard to your pregnancy?

6. Did you seek any other information or tests whilst pregnant and with regard to the Spina bifida diagnosis?