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Parents’ Perspective on the Hybrid Approach

  • Sharon L. CheathamEmail author
Chapter

Abstract

The diagnosis of HLHS can be devastating for parents, whether diagnosed prenatally or after birth. The parents’ perspective on the hybrid approach to managing infants with HLHS, and the psychosocial impact, have not been well reported. Parents need and expect honesty, empathy, and compassion during delivery of the diagnosis and therapeutic options. The information needs to be presented in layman’s terms, avoiding too much clinical jargon and utilizing pictures to help provide a clear understanding of the severity of the disease and surgical options. During the interstage period, parents are faced with other stressors before undergoing Comprehensive Stage II. Parents are fearful of their child not surviving and, if they do, what will the neurodevelopmental outcomes be for their future. Health-care providers need to better support patients and families from the initial diagnosis, whether a fetal or postnatal diagnosis. All options need to be explained to parents free of bias. Every single-ventricle patient should be enrolled in a home monitoring program with 24/7 availability and access to support from the single-ventricle cardiac team, as this is a stressful time for families. Every family needs psychosocial support and counseling. The financial burden alone warrants assistance due to frequent evaluations, echocardiograms, hospital admissions, cardiac surgeries, and interventional cardiac catheterization procedures. Family financial resources are often exhausted throughout early childhood for financial burdens do not end with the third-staged surgery. Care providers need to continue to evaluate neurodevelopment throughout childhood, providing interventions and support for patients, for the best possible outcomes.

References

  1. 1.
    Yates AR, et al. Initial counseling prior to palliation for hypoplastic left heart syndrome. Congenit Heart Dis. 2011;6(4):347–58.CrossRefPubMedGoogle Scholar
  2. 2.
    Cantwell-Bartl AM, Tibballs J. Psychosocial responses of parents to their infant’s diagnosis of hypoplastic left heart syndrome. Cardiol Young. 2015;25(6):1065–73.CrossRefPubMedGoogle Scholar
  3. 3.
    Ghanayem NS, Cava JR, Jaquiss RD, Tweddell JS. Home monitoring of infants after stage one palliation for hypoplastic left heart syndrome. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2004;7:32–8.CrossRefPubMedGoogle Scholar
  4. 4.
    Ghanayem NS, Hoffman GM, Mussatto KA, Cava JR, Frommelt PC, Rudd NA, et al. Home surveillance program prevents interstage mortality after the Norwood procedure. J Thorac Cardiovasc Surg. 2003;126(5):1367–77.CrossRefPubMedGoogle Scholar
  5. 5.
    Ghanayem NS, Tweddell JS, Hoffman GM, Mussatto K, Jaquiss RD. Optimal timing of the second stage of palliation for hypoplastic left heart syndrome facilitated through home monitoring, and the results of early cavopulmonary anastomosis. Cardiol Young. 2006;16 Suppl 1:61–6.CrossRefPubMedGoogle Scholar
  6. 6.
    Hehir DA, Cooper DS, Walters EM, Ghanayem NS. Feeding, growth, nutrition, and optimal interstage surveillance for infants with hypoplastic left heart syndrome. Cardiol Young. 2011;21 Suppl 2:59–64.CrossRefPubMedGoogle Scholar
  7. 7.
    Miller-Tate H, Stewart J, Allen R, Husain N, Rosen K, Cheatham JP, et al. Interstage weight gain for patients with hypoplastic left heart syndrome undergoing the hybrid procedure. Congenit Heart Dis. 2013;8(3):228–33.CrossRefPubMedGoogle Scholar
  8. 8.
    Rudd NA, Frommelt MA, Tweddell JS, Hehir DA, Mussatto KA, Frontier KD, Slicker JA, Bartz PJ, Ghanayem NS. Improving interstage survival after Norwood operation: outcomes from 10 years of home monitoring. J Thorac Cardiovasc Surg. 2014;148(4):1540–7.CrossRefPubMedGoogle Scholar
  9. 9.
    Hansen JH, Furck AK, Petko C, Buchholz-Berdau R, Voges I, Scheewe J, Rickers C, Kramer HH. Use of surveillance criteria reduces interstage mortality after the Norwood operation for hypoplastic left heart syndrome. Eur J Cardiothorac Surg. 2012;41(5):1013–8.CrossRefPubMedGoogle Scholar
  10. 10.
    Stewart J, Dempster R, Allen R, Miller-Tate H, Dickson G, Fichtner S, Principe AJ, Fonseca R, Nicholson L, Cua CL. Caregiver anxiety due to interstage feeding concerns. Congenit Heart Dis. 2015;10(2):E98–106. doi: 10.1111/chd.12257.CrossRefPubMedGoogle Scholar
  11. 11.
    Knirsch W, Liamlahi R, Hug MI, et al. Mortality and neurodevelopmental outcome at 1 year of age comparing hybrid and Norwood procedures. Eur J Cardiothorac Surg. 2012;42(1):33–9.CrossRefPubMedGoogle Scholar
  12. 12.
    Cheatham SL, Carey H, Chisolm JL, Heathcock JC, Steward D. Early results of neurodevelopment following hybrid stage I for hypoplastic left heart syndrome. Pediatr Cardiol. 2015;36(3):685–91.CrossRefPubMedGoogle Scholar
  13. 13.
    Galantowicz M, Cheatham JP, Phillips A, Cua CL, Hoffman TM, Hill SL, et al. Hybrid approach for hypoplastic left heart syndrome: intermediate results after the learning curve. Ann Thorac Surg. 2008;85(6):2063, 70; discussion 2070–1.CrossRefPubMedGoogle Scholar
  14. 14.
    Schranz D, Bauer A, Reich B, Steinbrenner B, Recla S, Schmidt D, et al. Fifteen-year single center experience with the “Giessen Hybrid” approach for hypoplastic left heart and variants: current strategies and outcomes. Pediatr Cardiol. 2015;36(2):365–73.CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  1. 1.The Heart Center, Nationwide Children’s HospitalColumbusUSA

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