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J Perinatol. 2000 Sep;20(6):363-5.

Hypoplastic left heart syndrome: "to treat or not to treat".

Author information

1
Neonatal Intensive Care Unit, University of Alberta Hospital, Edmonton, Canada.

Abstract

OBJECTIVE:

To review our experience in managing infants with hypoplastic left heart syndrome (HLHS) and to establish a consistent approach in counseling families based on our experience and on review of medical literature.

METHODS:

Infants were divided into three group periods based on significant changes in the approach to treatment. After a diagnosis of HLHS was made, a multidisciplinary team met the family to discuss different management options: compassionate care, active treatment by heart transplantation, or Norwood staged surgery.

RESULTS:

Parents of 58 infants (58%) opted for compassionate care, and 41 (42%) opted for active treatment. Seven infants underwent heart transplantation and all remain alive. A total of 27 infants underwent Norwood stage I, and 19 (70%) survived. There was a significant increase in parental choice for active treatment over the three time periods.

CONCLUSION:

These results indicate that HLHS can no longer be regarded as a uniformly fatal congenital anomaly. However, due to uncertainty about long-term outcome, discussion with parents should be open, and compassionate care should be presented as a management option until long-term data are available.

PMID:
11002875
[Indexed for MEDLINE]

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