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Still, in September 2010, the federal government recommended adding screening for CCHD to the Recommended Uniform Screening Panel, which states can adopt through legislation or other avenues. As a result, more states are likely to mandate CCHD screening in the future. All newborn screening programs are run at the state level.
Meanwhile, since pulse oximetry isn’t included in our state’s newborn screening panel, you can request the test, which will be conducted at no cost to you as part of the Affordable Care Act. The cost of pulse oximetry is typically included in hospital fees and covered by insurance. If you don’t have insurance, you may need to pay out of pocket. But, in general, no baby can be denied pulse oximetry or newborn screening based on a parent’s inability to pay or a parent’s citizenship status.
All told, talk with your doctor or midwife to make arrangements to get the test. CCHD screening is typically hospital based. “It’s important to just ask your doctor or birthing facility staff, ‘Do you do pulse oximetry?’” Stark says. If the answer is no, she suggests asking another question: “What do I need to do to make sure this test is done on my baby?”
Warning Signs of CCHD
Pulse oximetry doesn’t detect every form of CCHD, nor is it 100-percent accurate. So it’s possible for a baby to still have CCHD or another congenital heart defect even if he has had pulse oximetry and tests negative for the condition. That’s why it’s important to be aware of the signs and symptoms of heart defects. Red flags: Babies who fall asleep during feeding; sweat around the head, especially during feeding; breathe fast when resting or sleeping; appear pale or bluish; aren’t gaining weight; sleep a lot and aren’t playful or curious much at all; are difficult to console; and have a puffy face, hands, or feet. If your baby shows any of these signs or symptoms, she may have a congenital heart problem. If your baby has two or more of these symptoms, talk to your pediatrician about getting a referral to a pediatric cardiologist.
For a list of all the newborn conditions screened in New York (or to search any other state), visit babysfirsttest.org.
Sandra Gordon is an award-winning freelance writer who delivers expert advice and the latest developments in health, nutrition, parenting, and consumer issues. Her most recent book is Save a Bundle: 50+ Ways to Save Big on Baby Gear. Gordon lives in Fairfield County, CT with her husband and two daughters.
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