Heart failure & cardiomyopathiesCohort study

Fetal Cardiomyopathy in the Contemporary Era: A Multicenter Fetal Heart Society Research Collaborative Study

Circ Heart FailPublished

  • single-arm (descriptive) retrospective cohort study
  • 26 North American centers
  • Fetal Heart Society Research Collaborative

Authors' conclusion

Fetal cardiomyopathy outcomes have improved in the current era, although only half achieve 1-year cardiac transplant-free survival. Genetic testing identifies a cause in one-third of cases. Hydrops at the time of fetal cardiomyopathy diagnosis and a prenatal diagnosis of extra-cardiac structural anomalies remain important risk factors for mortality.

Study context

Population
Fetal cardiomyopathy cases diagnosed from January 2017 to December 2021; cases attributable to maternal diabetes, extra-cardiac conditions, structural heart disease, or arrhythmias excludedcases of fetal cardiomyopathy
Participants
148 cases

Main finding

As reported in the abstract

Pregnancy termination

Opted for pregnancy termination

6.7% (10/148)

Observational data: associations, not effects.

Further findings

Fetal death among continuing pregnancies

Continuing pregnancies with fetal death
8.6% (12/138)

Overall survival among continuing pregnancies · 1 year

Overall 1-year survival
61.5% (85/138)

Transplant-free survival among continuing pregnancies · 1 year

1-year transplant-free survival
50.0% (69/138)

Palliative care from the outset (of live births)

Of live births, received palliative care from the outset
8.8% (11/124)

Listing for cardiac transplant and transplantation · by age 1-year

Of those with intention to treat, listed for cardiac transplant
21.2% (24/113)
Of those listed, received transplantation by age 1-year
75.0% (18/24)

Genetic etiologies

Genetic etiologies found
34.0% (50/147)
Variants of uncertain significance in an additional
27.2% (40/147)

Prenatal factors associated with death or transplant by 1-year of age

Fetal hydrops at the time of prenatal diagnosis
P = 0.001
Prenatal diagnosis of extracardiac structural anomalies
P ≤ 0.001

Follow-up completeness

Lost to follow-up
1.4% (2/138)

Original publication

Fetal Cardiomyopathy in the Contemporary Era: A Multicenter Fetal Heart Society Research Collaborative Study. Circ Heart Fail. Published 7 August 2026. doi:10.1161/circheartfailure.126.014394

Summarised from the published abstract; every number is checked against it