Meet Ava Allen. She is a bright, energetic toddler from Winslow. She is also the daughter of one of this column’s authors.

Ava is living with a critical congenital heart defect called tricuspid atresia. At age 2, she already has had four open heart surgeries, but if her heart defect had gone undiagnosed, she would have died.

Fortunately, Ava’s heart defect was recognized in utero and confirmed with a special test, called a pulse-oximetry screening of newborns, given to her at birth.

If structural defects of the heart are left undiagnosed, they can prove fatal. Only 75 percent of these defects are recognized at 20-week diagnostic ultrasounds, leaving 25 percent to be discovered later or reported in an autopsy.

Every year, thousands of patients are hospitalized or die because of heart defects, including many here in Maine. A pulse-oximetry test, inexpensive and non-invasive, is administered at birth and can detect critical congenital heart defects, drastically reducing the number of infants who die from them.

We believe this simple test must become a standard of care, and Maine should take the lead in its implementation.

That’s why the column’s other author submitted emergency legislation to require this additional screening for newborns on behalf of Ava, the Allen family and the many Maine parents who struggle with infant heart defects.

The measure is modeled after a similar law recently passed in New Jersey by a Democratic Assembly and signed by Republican Gov. Chris Christie.

The importance of developing screening strategies is recognized by American Academy of Pediatrics, the American College of Cardiology Foundation, the American Heart Association and medical providers.

Maine’s doctors, nurses, and other health professionals already provide excellent care and work every day to detect heart defects. Pulse-oximetry screening will give them one more tool.

By introducing the bill as emergency legislation, we hope that lawmakers and the medical community will begin the important public conversation around this important issue.

Legislative action will complement a recent decision by the federal Department of Health and Human Services to provide support for newborn screening demonstration projects, and implement a public health approach to screening for congenital heart defects.

Lawmakers will face enormous challenges when the Legislature meets in January. Controversial items about budgets, voting laws and rights for working people that were set aside this year will require hard work and tough choices next year.

In contrast, this landmark legislation is an opportunity for lawmakers to come together to help Maine families and save lives and medical dollars.

We hope that Maine Senate President Kenneth Raye and Maine House Speaker Robert Nutting will allow this legislation to move forward when the Legislative Council meets on Monday.

Maine people and young children like Ava Allen are depending on it.

Rep. Henry Beck, D-Waterville, is serving his second term representing part of Waterville and part Oakland in the Maine House. Megan Allen of Winslow is a nursing student and advocate for pulse-oximetry testing.


Only subscribers are eligible to post comments. Please subscribe or to participate in the conversation. Here’s why.

Use the form below to reset your password. When you've submitted your account email, we will send an email with a reset code.

filed under: