Review
Supporting the family left behind – Loss of a child to congenital heart disease

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Highlights

  • Congenital heart disease is a significant cause of morbidity and mortality in the pediatric population.

  • Parental grief after the death of a child is an intense process.

  • Hospital-based bereavement programs have been shown to improve the bereavement process for parents and extended families.

  • Research is needed for the pediatric congenital heart disease population regarding the grief process and needs of families.

Abstract

Congenital heart disease is a significant cause of childhood morbidity and mortality. Advances in medical and surgical therapies for children with congenital heart disease have both prolonged and enhanced the lives of children and their families affected by congenital and acquired heart disease. While many of these children will ultimately lead happy and productive lives, a significant proportion of this patient population will succumb to their disease. This paper will briefly highlight the incidence and outcomes of congenital heart disease as well as provide an in-depth review of techniques, such as hospital-based bereavement programs, for supporting the families of those children who do not survive.

Introduction

In the United States, approximately 1% of live births are affected by congenital heart disease, with similar rates in the rest of the world [1]. Approximately 25% of children born with congenital heart disease require intervention in the first year of life due to critical congenital heart disease, including those born with hypoplastic left heart syndrome, tetralogy of fallot, coarctation of the aorta, and transposition of the great vessels [1]. Improvements in surgical techniques and advances in post-operative care have enhanced survival in children with congenital heart disease and there are now more adults living with congenital heart disease than children [1,2]. Many children with congenital heart disease will go on to live long lives, however, a subset of children will succumb to their disease, before or after their surgical palliation or repair. Losing a child is a devastating and impactful experience for surviving family members. These effects encompass both short and long term physical and psychological consequences, affecting everyday lives, year after year.

Section snippets

Background

The landscape of children dying from advanced heart disease is different from other conditions such as death associated with oncologic processes; the children are often younger, usually less than one year of age, and commonly require a high amount of technologic support at the time of their death [3]. The clear majority of children with advanced heart disease are intubated and many receive mechanical circulatory support (e.g. extracorporeal membrane oxygenation, ventricular assist device) near

Parental Grief

The death of a child forever impacts the family that is left behind. When considering parents, extended family members, and grandparents, it has been estimated that nearly 19% of the adult U.S. population has experienced the death of a child [6]. Bereaved parents report many negative consequences including anxiety, guilt, depressive symptoms, overall poorer well-being, and more health problems [[7], [8], [9]]. Studies have shown that more profound grief is experienced when parents lose a child

What Do Grieving Parents Need?

Parental needs during time of bereavement in a highly technological unit such as a cardiac intensive care unit are multifaceted and intensely spiritual. Children are unique and differ from adult patients at the end of life beyond their physical differences. They are at different development levels, have different psychological needs, and have varied relationships with family members [20]. While critically ill in an intensive care unit, additional challenges include their inability to

How Do Health Professionals Help?

In alignment with these results from numerous interviews and surveys, it is now largely recommended that hospitals establish bereavement programs for parents [32]; as such, many hospitals have worked to foster these bereavement programs for parents, siblings, and extended families of deceased children. Both the National Consensus Project for Quality Palliative Care and the National Hospice and Palliative Care Organizations recommend specialized bereavement programs as a preventative model of

Health Care Professional Needs

Neonatal and pediatric nurses often accept that assisting a patient and their family during transition to death is part of their role, though often feel conflicted when continuation of aggressive therapies is maintained in futile situations [46]. Nurses have also described delaying death to assist families in processing the information of the impending death and creating memories (e.g. keepsakes) for the families and encourage families to participate in end of life care (e.g. bathing, hair

Conclusions

Congenital heart disease remains a significant cause of both morbidity and mortality among the pediatric population. Bereavement programs have been shown to provide necessary support to parents and families of deceased children, however, there has been very little research in bereavement programs and end of life support among the congenital heart disease population. Ultimately, more research is needed to effectively develop bereavement programs for parents and extended family members, as well

Conflict of Interest

Neither author report any conflicts of interest.

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