You may have heard about a recent legislative proposal to require all states to perform a pulse oximetry screening on newborns after birth. The effort was largely launched by the McCormick family who lost their 5-day-old daughter Cora in 2009 to an undetected heart defect.

What does this new legislation mean and why is it important?

Congenital heart defects are the most common birth defect and the leading cause of death from birth defects during the first year of life, according to Saving Little Hearts, an organization dedicated to helping families of children with heart defects. Pulse Ox Advocacy says only 20 percent of heart defects are caught in utero, or before the baby is born.  Right now, when a baby is born, most state laws do not require the hospital to check his heart for any abnormalities. For that reason, many heart defects are missed entirely or diagnosed later when symptoms (like breathlessness or loss of consciousness, for example) present.

The bill, which has been introduced in the state of Tennessee, proposes that all birthing hospitals require a pulse oximetry screening for newborns. The device -- a monitor that they put on the baby’s finger or foot – is painless and tests the levels of oxygen saturation. If the baby’s oxygen saturation is less than 95 percent, the law would require further testing of the baby’s heart to rule out any congenital heart defects.

“This is an excellent example of how the right public policy can work for children and not only produce better outcomes and quality of life, but also help to reduce costs by detecting and addressing problems early,” said Maureen O’Connor, director of Public Policy at Le Bonheur. Maureen has advocated at the state level to pass the bill, and Le Bonheur Pediatric Cardiologist Jean Ballweg, MD, has been named a cardiology consultant for state of Tennessee on this issue.

Pulse Ox Advocacy’s website offers more information about this initiative, including ways to help advocate for the bill to be passed in your state. It also offers a map that shows which states have introduced the bill or have current legislation that requires some sort of screening.

At Le Bonheur Children's Hospital, speaking on behalf of our area’s kids in the public policy arena is part of our mission. We make sure that our kids’ needs and concerns are heard when important decisions are made.

The Casey family of Cordova, Tenn., believes in the power of advocacy. In fact, they’re in Washington D.C. today for Family Advocacy Day – an annual event hosted by the National Association of Children’s Hospitals. In D.C., they get a chance to tell lawmakers on Capitol Hill why children’s health care is so important. In particular, the Caseys will be talking about CoverKids, a state Children's Health Insurance Program (CHIP) that provides affordable, comprehensive health coverage for qualifying children 18 and younger.

The Caseys’ know how important accessible health care is for kids because of their experiences with son Shane. Now 5, Shane was diagnosed with infantile spasms, a rare form of epilepsy, as an infant. He was a healthy baby until – at age 4 months – he began convulsing violently. His seizures became worse and more frequent, and sometimes he would lose consciousness. Once diagnosed by a neurologist at Le Bonheur, Shane was prescribed drug therapy to calm his seizures. He’s seizure free now.

“This is why our family gladly advocates for children’s health issues for the entire Mid-South. Too many miracles have taken place within Le Bonheur for us to sit quietly,” said Tiffany, Shane’s mom.

For the Caseys, affordable health coverage is an important issue and one they plan to take to Capitol Hill. CoverKids helped Shane get the treatment he needed in the midst of his parents’ job changes.

“After losing our jobs in the throws of this downward economy, we found that private insurance companies would not cover our son due to his pre-existing condition, even though he had been cured and seizure free for two years,” said Tiffany. "That was when I found out about the reasonable monthly premium cost for Tennessee's CoverKids program.” 

You don’t have to go to Washington D.C. to advocate for kids, says Tiffany. You don’t even have to have had a hospital experience. Kids need adults to speak up for them when it comes to public policy issues.

Here’s how you can be an advocate for kids:

• Write a letter to your elected officials. Here’s a great resource for finding out who your elected officials are and how to reach them.
• Stay up-to-date on the latest policies affecting kids’ health and well-being. Just being knowledgeable is important. You can check out the National Association of Children's Hospitals website for the latest public policy issues.
• Join Le Bonheur’s Grassroots Network. Through the network, you will receive updates on the latest public issues and learn of ways to help.
• Use personal examples in your advocacy efforts.