Clinical Course and Interstage Monitoring After the Norwood and Hybrid Procedures for Hypoplastic Left Heart Syndrome

Infants with hypoplastic left heart syndrome (HLHS) are at risk for interstage morbidity and mortality, especially between the first and second surgical stages after the Norwood and hybrid procedures. This study compared the morbidity and mortality of patients treated by either the Norwood or the hybrid procedure for HLHS between the first and second stages who were undergoing interstage monitoring. Between October 2008 and December 2011, 26 infants (14 boys) with HLHS (n=16) and other univentricular heart malformations with aortic arch anomaly (n=10) were scheduled for interstage monitoring after Norwood I (n=12) and hybrid (n=14) procedures. Three infants (11.5%) died after first-stage palliation (one hybrid patient and two Norwood patients), and three infants (11.5%) died after second-stage palliation (two hybrid patients and one Norwood patient) (p=0.83), all after early second-stage surgery (<90days). The Norwood I and hybrid procedures did not differ in terms of overall mortality (23%) (three hybrid and three Norwood patients; p=1.00). Seven infants (26.9%) could not be discharged from the hospital due to hemodynamic instability and were referred for early second-stage surgery (<90days). After the first stage, the invasive reevaluation rate before discharge was high (53.8%), with cardiac catheterizations for 8 of 14 patients after the hybrid procedure and for 6 of 12 patients after the Norwood procedure (p=0.69). A total of 11 reinterventions were performed (eight by catheter and three by surgery). Of the eight catheter reinterventions, five were performed for hybrid patients (p=0.22). For 14 infants, 89days (range 10-177days) of interstage monitoring were scheduled. One infant (3.9%) died during the interstage monitoring. The findings showed a breach of the physiologic criteria for interstage monitoring in seven infants (50%) after 10days (range 4-68days) (five hybrid and two Norwood patients), leading to rehospitalization and catheterization for six patients (four hybrid and two Norwood patients), requiring interventions for two patients (patent arterial duct stent dilation, and atrial septal defect stenting, all for hybrid patients). Overall, three of the seven patients with red flag events of interstage monitoring were candidates for early second-stage surgery. In conclusion, morbidity among infants treated for HLHS remains high, either before or after hospital discharge, emphasizing the need of interstage monitoring programs. Despite retrograde aortic flow in infants with HLHS after the hybrid procedure, the mortality rate was comparable between the two groups. Mortality occurs after early second-stage surgery (<90days)

Clinical course and interstage monitoring after the Norwood and hybrid procedures for hypoplastic left heart syndrome

Infants with hypoplastic left heart syndrome (HLHS) are at risk for interstage morbidity and mortality, especially between the first and second surgical stages after the Norwood and hybrid procedures. This study compared the morbidity and mortality of patients treated by either the Norwood or the hybrid procedure for HLHS between the first and second stages who were undergoing interstage monitoring. Between October 2008 and December 2011, 26 infants (14 boys) with HLHS (n = 16) and other univentricular heart malformations with aortic arch anomaly (n = 10) were scheduled for interstage monitoring after Norwood I (n = 12) and hybrid (n = 14) procedures. Three infants (11.5 %) died after first-stage palliation (one hybrid patient and two Norwood patients), and three infants (11.5 %) died after second-stage palliation (two hybrid patients and one Norwood patient) (p = 0.83), all after early second-stage surgery (<90 days). The Norwood I and hybrid procedures did not differ in terms of overall mortality (23 %) (three hybrid and three Norwood patients; p = 1.00). Seven infants (26.9 %) could not be discharged from the hospital due to hemodynamic instability and were referred for early second-stage surgery (<90 days). After the first stage, the invasive reevaluation rate before discharge was high (53.8 %), with cardiac catheterizations for 8 of 14 patients after the hybrid procedure and for 6 of 12 patients after the Norwood procedure (p = 0.69). A total of 11 reinterventions were performed (eight by catheter and three by surgery). Of the eight catheter reinterventions, five were performed for hybrid patients (p = 0.22). For 14 infants, 89 days (range 10-177 days) of interstage monitoring were scheduled. One infant (3.9 %) died during the interstage monitoring. The findings showed a breach of the physiologic criteria for interstage monitoring in seven infants (50 %) after 10 days (range 4-68 days) (five hybrid and two Norwood patients), leading to rehospitalization and catheterization for six patients (four hybrid and two Norwood patients), requiring interventions for two patients (patent arterial duct stent dilation, and atrial septal defect stenting, all for hybrid patients). Overall, three of the seven patients with red flag events of interstage monitoring were candidates for early second-stage surgery. In conclusion, morbidity among infants treated for HLHS remains high, either before or after hospital discharge, emphasizing the need of interstage monitoring programs. Despite retrograde aortic flow in infants with HLHS after the hybrid procedure, the mortality rate was comparable between the two groups. Mortality occurs after early second-stage surgery (<90 days)

Zwischen Himmel und Hölle: Erfahrungen von Eltern mit einem kritisch kranken Kind mit extrakorporaler Membranoxygenierung (ECMO).

Between Heaven and Hell: Experiences of parents with a critically ill child with extracorporeal membrane oxygenation (ECMO) - A qualitative-explorative study with couple interviews Abstract.Background: It is a traumatic experience for parents when their child's severe illness necessitates a period of intensive care. This situation becomes even more challenging for parents if a highly technical therapy such as extracorporeal membrane oxygenation (ECMO) in the Pediatric Intensive Care Unit is required. Aim: The study explores the experiences of parents of critically ill children undergoing ECMO therapy with the aim of better understanding their needs and identifying courses of action for healthcare professionals. Method: The qualitative-explorative study was based on interviews with six couples whose critically ill child is or has been receiving ECMO during the last year, which were used to examine their experiences. The analysis of six such interviews was performed using intensive paraphrasing and inductive coding. Results: The parents' situation can be best characterised as ambivalent with simultaneous feelings of hope and fear. They recognize the danger to their child's life, leading to intense feelings of helplessness with strong emotional reactions. It becomes apparent that there is too little fit between the emotional world of the parents and the action patterns of the health care professionals. Conclusions: The health care professionals thinking logic is based on professional criteria, such as the life threat and risks of ECMO, which ignores the emotional needs of the parents. For this reason, it is important to be more sensitive to the parents and to share positive little signs about their child' s state of health and ability to suffer with them

Psychosocial impact on families with an infant with a hypoplastic left heart syndrome during and after the interstage monitoring period - a prospective mixed-method study

AIMS AND OBJECTIVES To investigate parents' experiences, coping ability and quality of life while monitoring their sick child with hypoplastic left heart syndrome at home. BACKGROUND Interstage home monitoring for children with hypoplastic left heart syndrome reduces interstage mortality between Norwood stages I and II. Little is known about the psychosocial impact of interstage home monitoring. DESIGN Prospective mixed-method study. METHOD This study assessed the psychosocial impact on parents during IHM. This contains for quantitative assessment the Short Form Health Survey questionnaire and the Impact of Family Scale administered 1 and 5 weeks following discharge before and after stage II. For qualitative assessment semi-structured interviews focussing on the postdischarge coping strategies were conducted twice, 5 weeks after hospital discharge before and after stage II. RESULTS Ten infants (8 males) with hypoplastic left heart syndrome (n=7) or other types of univentricular heart malformations (n=3), and their parents (9 mother/father 2-parent households, 1 single mother) were included. There were no interstage deaths. Mental Health Composite Summary scores were low in both parents (mothers: 40.45±9.07; fathers: 40.58±9.69), and lowest for the item "vitality" (mothers: 37.0±19.46; fathers: 43.12±25.9) before and after stage II. Impact of Family Scale values showed higher daily and social burdens for mothers. "Becoming a family" was the most important task as coping strategy to equilibrate the fragile emotional balance. The parents judged interstage home monitoring as a protective intervention. CONCLUSIONS Although psychosocial burden before and after stage II remains high, becoming a family is an essential experience for parents and confirms their parenthood. This article is protected by copyright. All rights reserved

Psychosocial impact on families with an infant with a hypoplastic left heart syndrome during and after the interstage monitoring period - a prospective mixed-method study

To investigate parents' experiences, coping ability and quality of life while monitoring their sick child with hypoplastic left heart syndrome at home.; Interstage home monitoring for children with hypoplastic left heart syndrome reduces interstage mortality between Norwood stages I and II. Little is known about the psychosocial impact of interstage home monitoring.; Prospective mixed-method study.; This study assessed the psychosocial impact on parents during interstage home monitoring. This contains for quantitative assessment the Short Form Health Survey questionnaire and the Impact of Family Scale administered one and five weeks following discharge before and after stage II. For qualitative assessment, semi-structured interviews focussing on the postdischarge coping strategies were conducted twice, five weeks after hospital discharge before and after stage II.; Ten infants (eight males) with hypoplastic left heart syndrome (n = 7) or other types of univentricular heart malformations (n = 3), and their parents (nine mother/father two-parent households, one single mother) were included. There were no interstage deaths. Mental Health Composite Summary scores were low in both parents (mothers: 40·45 ± 9·07; fathers: 40·58 ± 9·69) and lowest for the item 'vitality' (mothers: 37·0 ± 19·46; fathers: 43·12 ± 25·9) before and after stage II. Impact of Family Scale values showed higher daily and social burdens for mothers. 'Becoming a family' was the most important task as coping strategy to equilibrate the fragile emotional balance. The parents judged interstage home monitoring as a protective intervention.; Although psychosocial burden before and after stage II remains high, becoming a family is an essential experience for parents and confirms their parenthood.; Healthcare professionals must be aware of parents' needs during this vulnerable interstage period and to provide psychosocial and nursing support