Guidelines for counselling for prenatal diagnosis of spina bifida

A new guideline for prenatal counselling for families expecting a baby with spina bifida, and other neural tube defects, stresses the importance of parental choice, timely collaborative shared decision making and providing data in a value-neutral manner.

“Hearing that their baby has spina bifida is a pivotal moment for parents,” says Dr. Paige Church, developmental paediatrician at Sunnybrook and lead author of the guideline in the Journal of Pediatric Rehabilitation Medicine. “It’s critical for health care providers to share information in a timely, evidence-based and objective manner. The way that we share information with parents provides the basis for important family decisions.”

At the time of diagnosis, families may experience intense emotions such as uncertainty, confusion, grief, anxiety and anger. At the same time, the guideline explains, families need to absorb a great deal of information about their options and need to understand the risks and benefits of those options. Families require education about the treatment options – including fetal surgery, postnatal closure, adoption, and termination – available when a fetus is affected by spina bifida.

“When speaking with families, there are a host of issues at play. Different cultures have different perceptions of disability. There is also the intense stress of processing the diagnosis. It’s also critical that families have timely access to information,” explains Dr. Church, who cares for children with spina bifida in her roles at Sunnybrook and Holland Bloorview.

Spina bifida is typically identified between 18 and 20 weeks of pregnancy. Identifying the type of defect is important as it ties into treatment options and their timing. Counselling by a team of specialists, including developmental pediatricians, physiatrists and advanced practice nurses, can address short-term and long-term expectations for the child and the family.

“It’s incredibly important to consult with families in what we call a ‘value-neutral manner’. This means avoiding words such as ‘risk’ or ‘bad news’, instead opting for words like ‘significant outcome’ and ‘potential challenges’. This way, families can assign their own values to the news provided to them, rather than adopt the health care provider’s values or biases,” adds Dr. Church.

The guideline urges further research to understand what is helpful for families’ decision making to assist in improving counselling and support provided.