Standard of Care for Discussing FETO in Severe Congenital Diaphragmatic Hernia
Yes, it is below the standard of care for a doctor not to discuss Fetal Endoscopic Tracheal Occlusion (FETO) as a treatment option for a fetus with a large congenital diaphragmatic hernia (CDH) with intestines in the chest displacing the heart.
Rationale for FETO Discussion in Severe CDH
In cases of severe CDH with the following characteristics:
- Large diaphragmatic hernia
- Intestines in the chest
- Cardiac displacement
- Diagnosis at 20 weeks gestation
These findings indicate a severe form of CDH that warrants discussion of all available treatment options, including FETO.
Evidence Supporting FETO Discussion
The American Heart Association and American Thoracic Society guidelines specifically address management of CDH and recommend:
- ECMO for patients with CDH with severe pulmonary hypertension who do not respond to medical therapy (Class I; Level of Evidence B) 1
- Evaluation for long-term pulmonary arterial hypertension (PAH)-specific therapy for pulmonary hypertension in infants with CDH should follow recommendations for all children with PH 1
While these guidelines don't specifically mention FETO, they emphasize the need for comprehensive management approaches for severe CDH.
FETO Procedure and Outcomes
FETO is performed between 26-30 weeks gestation and involves:
- Passing an endoscope through the fetal mouth to the carina
- Deploying a balloon just above the carina
- Ultrasound surveillance every 2 weeks to monitor balloon integrity and fetal pulmonary response
- Balloon removal at approximately 34 weeks 2
Research evidence shows that FETO can significantly improve survival rates:
- In fetuses with left-sided CDH, survival increased from 24.1% to 49.1%
- In right-sided CDH, survival increased from 0% to 35.3% 3
A systematic review and meta-analysis demonstrated:
- Increased neonatal survival at 30 days (RR 5.8)
- Increased survival at 6 months (RR 10.5) 4
Risks and Considerations
FETO is associated with certain risks that should be discussed:
- Premature rupture of membranes (47.1% of cases)
- Preterm delivery (median gestational age 35.3 weeks)
- Potential complications with balloon removal 3
Standard of Care Requirements
The standard of care requires physicians to:
- Discuss all reasonable treatment options
- Present potential benefits and risks of each option
- Allow patients to make informed decisions
In this case, presenting only three options (postnatal surgery, no intervention with expected death, or abortion) without mentioning FETO fails to meet this standard, particularly given:
- The severity of the CDH (large with cardiac displacement)
- The established evidence showing FETO can improve survival in severe cases
- The timing of diagnosis (20 weeks) allows sufficient time to consider and arrange FETO if desired
Conclusion
Given the severity of the CDH and the documented survival benefits of FETO in such cases, failing to discuss this option falls below the standard of care. While FETO carries risks and is not universally available, patients should be informed about this potential intervention to make a fully informed decision about their pregnancy management.