Committee advances bill to add family-history screening for infant congenital heart disease amid mixed medical opinion

House Health & Human Services Committee members gave House Bill 76 a due pass following testimony from parents, medical advocates and pediatric specialists about early detection of congenital heart disease (CHD) in newborns.

Sponsor Representative Thompson said the bill would require health-care providers to use a standardized family-history questionnaire during the newborn period. If certain answers indicate higher risk — for example a close relative with congenital heart disease, sudden cardiac death under age 50, or other listed cardiac conditions — the newborn would be referred for further testing such as an echocardiogram or electrocardiogram (ECG/EKG).

Parents and patient advocates from Hole in the Heart testified about children diagnosed late and the long-term medical and developmental consequences they observed. Sandra Sanchez Farlander and others described cases in which CHD was not identified until childhood, and said earlier screening and referral could prevent prolonged disability.

Pediatric cardiologists and neonatology leaders testified in opposition or with concern. Physicians told the committee pulse oximetry — the existing newborn oxygen-screening method — already identifies most critical CHD and that the proposed referral thresholds would substantially increase demand for echocardiograms and ECGs. Experts said statewide capacity for pediatric cardiology evaluations and neonatal transport is limited, that wait times are long, and that adding universal diagnostic referrals would create substantial cost and logistical burdens.

Multiple clinicians and the AAP-based experts pointed to studies showing pulse oximetry detects 95% of critical CHD in neonates; they warned the bill’s screening questions (for example, whether a parent “ever fainted” or had an unexplained seizure) were developed for other age groups and could create a very large referral population if applied literally to newborns.

Sponsor and advocates said an amendment (not presented to the committee in time for the hearing) narrows which family-history results would require referral and clarifies the primary-care provider’s judgment in escalation. The committee debated whether to roll the bill to allow time to circulate the amendment; members declined and advanced the bill in its present form. Representative Ferrari moved for a due pass; the motion passed on a roll call 5–4.

Several committee members said they supported the bill’s intent but expressed concern about mandating diagnostic testing in statute and recommended further working-group review to refine screening language and implementation steps before later committees or floor consideration.