Treatment options for hypoplastic left heart syndrome: a mother's perspective

The congenital heart defect of HLHS is nearly uniformly fatal without intervention. As surgeons gain experience with the techniques the success rates are improving; more infants with HLHS are being offered hope for survival and quality of life. The critical nature of this diagnosis, the relatively new treatment options, and uncertainty of the surgical outcome impose tremendous stress on the parents. Choice of treatment is difficult and should be made in collaboration with the attending physician. Although the first year of my son's life was difficult, the past 5 years have been wonderful. He continues to thrive and enjoy most of the activities other 6-year-olds enjoy. In retrospect, palliative surgery was a good option for him. As both his mother and a cardiac nurse, I recognize that he may once again require surgical intervention, but I am encouraged that medical and surgical advances are being made for children with HLHS.