TECHNOLOGICAL ADVANCES WITH HLHS
Until the 1980s, babies with HLHS died unexpectedly if their heart problem escaped diagnosis, or if they received compassionate care for their diagnosed HLHS and died within hours or days after their birth. In the 1980s, pediatric cardiac surgeon Dr. William Norwood pioneered a three-stage surgical approach to establish systemic blood flow by using the right ventricle as the pump instead of the hypoplastic, nonfunctional left ventricle (Norwood, 1989). The first operation (still referred to as a “palliative surgical approach,” as opposed to a “corrective surgery”) is the Norwood procedure and occurs during the first week of the baby’s life. With this surgical option, many babies with HLHS now survive the newborn period and have a chance at childhood and even adolescence, as most children with HLHS survive the two additional surgeries required during the first few years of their lives (Bove, 1998). The oldest children living with surgically treated HLHS are in their teen years, but uncertainty about long-term mortality and morbidity remain.
Neonatal heart transplantation, pioneered by Dr. Leonard Bailey at Loma Linda University Children’s Hospital, has also resulted in an increased survival rate for babies with HLHS (Fortuna, Chinnock, & Bailey, 1999). Growing evidence supports the conclusion that the neonate’s immature immune system is the ideal antidote for the long battled immunosuppression complications with transplantation (Bailey, 2001). The results of the transplantation of ABO-incompatible hearts, by using technology pioneered at The Hospital for Sick Children in Toronto, show improving survival rates after pediatric heart transplantation (Dellgren et al., 2001), which also bode well for babies with HLHS.
Facing Ongoing Emotional Challenges
The emotional challenges for parents of children whose medical conditions present ongoing concern go beyond the parents’ initial and ongoing grief. Fear, ambivalence, and the strain of care-taking tasks represent continuing challenges despite seemingly miraculous outcomes for their child. Since the 1960s, concerned practitioners and dedicated researchers in pediatric cardiology have considered the experience of these parents. Early findings (Garson et al., 1978; Glaser, Harrison, & Lynn, 1964) remain keenly relevant for today. Glaser et al’s qualitative interviews with 25 mothers of children with CHD told a story that repeats itself in the experiences of today’s parents of children with CHD (Jaworski, 1999). Uncertainty about the diagnosis, anxiety about their child’s symptoms, fears of their child dying, guilt, disappointment, and irritation with their burden, overprotective attitudes, and attempts to provide their child with a normal life characterized the experiences of these mothers in the 1960s. Glaser’s group concluded that “in as much as cardiovascular surgery has been recognized and acclaimed as a pioneering venture, it produced in a number of parents…both hope . . . and fear of being made victims of experimentation and imperfect techniques” (p.377). Technological advances have always been double-edged. The promise of high technology care fuels parents’ “hope for the best,” but deep down a self-protective instinct has parents “prepared for the worst” (Rempel, 1993). This ambivalence may be a product of the fear that differentiates parents of children with CHD from parents of healthy children.
Grasping Complex and Crucial Information
Parents must learn about their baby’s heart problem, symptoms, treatment options, medication administration, feeding, further testing, and surgery to confidently provide competent care and comfort for their child with CHD (Pinelli, 1991; Stinson & McKeever, 1995). Parents’ fears regarding their child’s well-being (Clarke & Miles, 1999; Cohn, 1996) and misconceptions, especially regarding cyanosis, sudden death, and vulnerability to infection (Uzark, Rosenthal, Behrendt, & Beckett, 1985), contribute to the crucial yet complex nature of this necessary learning process. Again, researchers described these informational needs, both intellectually and emotionally realized, early in the history of effective treatment for CHD. D’Arcy (1968) interviewed 694 mothers of babies with congenital anomalies. These mothers articulated their need for clear explanations of their baby’s problem in “simple language” from “sympathetic and understanding” medical and nursing staff who would give them opportunities to ask questions and avoid “unjustifiable pessimism and unrealistic optimism” (p. 798). These themes persist almost 30 years later. In a descriptive study with 30 mothers, Stinson and McKeever (1995)investigated mothers’ information needs related to caring for their infants at home after cardiac surgery. Investigators administered the 33-item Mothers’ Information Needs Instrument (MINI) and the Comfort/Readiness Scale shortly before and after discharge. All mothers rated most items on the MINI as “extremely important” for them to know. Many mothers’ predischarge ratings of their understanding of crucial items were low.
CHALLENGES FOR HEALTH CARE PROFESSIONALS
Contrary to the 1990s popular psychology adage, “Your issues are not my issues,” is the inextricable link between the challenges of parents of new survivors and the challenges the involved health care professionals must face. Dunst and Trivette’s (1996) empowerment perspective and, more specifically, their help giving framework provides an effective way of examining the challenges for nurses. Based on their clinical work and research with families whose children required early intervention as well as their review of the empowerment literature, Dunst and Trivette identified 3 components of “effective help-giving practices”—
technical quality, help giver traits/attributions, and participatory involvement. As professionals, including nurses, appropriately apply their knowledge and skills (ie, technical quality component), approach parents with compassion and care (ie, help giver traits), believe that parents are capable and resourceful (ie, help giver attributions), and involve parents in meaningful discussion of treatment options and joint decision-making (ie, participatory involvement), the competency of parents is enhanced.
Author: Gwen R. Rempel, RN, MSN, PhD(c)