Original Article

Is “Treat your child normally” helpful advice for parents of survivors of treatment of hypoplastic left heart syndrome?

Gwen R. Rempel^a1a2a4 c1, Margaret J. Harrison^a1 and Deanna L. Williamson^a3

^a1 Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada

^a2 Faculty of Nursing Medicine and Dentistry, Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada

^a3 Department of Human Ecology, University of Alberta, Edmonton, Alberta, Canada

^a4 Mazankowski Alberta Heart Institute, Edmonton, Alberta, Canada

Abstract

Background Developing technology affords children with complex congenitally malformed hearts a chance for survival. Parents gratefully pursue life-saving options on behalf of their children, despite the risks to the life of their child, and uncertainty about outcomes. Little is known about how mothers and fathers experience parenting a child whose new state as a survivor may include less than optimal developmental sequels.

Method Our study involved multiple interactive interviews with 9 mothers and 7 fathers of infants and preschool children with hypoplastic left heart syndrome who had survived the Norwood surgical approach. Qualitative methodology included grounded theory methods of simultaneous collection and analysis of data, and we used open and selective coding of transcribed interviews.

Results Parents used normalization in the context of uncertainty regarding the ongoing survival of their child. Parents described their underweight children as being on their own growth curve, and viewed their developmental progress, however delayed, as reason for celebration, as they had been prepared for their child to die.

Conclusion There is growing evidence that children with congenitally malformed hearts who require surgical intervention during the first year of life may experience developmental delay. The use of normalization by their parents may be effective in decreasing their worry regarding the uncertain future faced by their child, but may negatively affect the developmental progress of the child if they do not seek resources to assist development. Advice from paediatric specialists for parents to view their children as normal needs to be balanced with assistance for parents to access services to support optimal growth and development of their child.

(Accepted November 12 2008)

Keywords

• Congenital heart disease;
• cardio-thoracic nursing;
• family care;
• child nursing;
• child development;
• early intervention

Correspondence:

^c1 Correspondence to: Gwen R. Rempel RN PhD, University of Alberta, Faculty of Nursing, 3rd Floor Clinical Sciences Building, Edmonton, AB T6G 2G3 Canada. Tel: 780-492-8167; Fax: 780-492-2551; Home: 403-578-2679; E-mail: gwen.rempel@ualberta.ca