Newborn Screening Test Could Save Lives

Research paper: Impact of pulse oximetry screening on the detection of duct dependent congenital heart disease: A Swedish prospective screening study in 39,821 newborns

The British Medical Journal

Routine screening of blood oxygen levels before discharge from hospital improves the detection of life threatening congenital heart disease in newborns and may save lives, according to a study published on bmj.com today.

The low false positive rate of pulse oximetry screening and the reduced need for treatment because of a timely diagnosis also makes this a cost effective intervention, say the authors.

Pulse oximetry screening has been suggested for early detection of congenital heart disease, but its effectiveness is unclear.

The authors found that in apparently well babies ready for discharge a combination of clinical examination and pulse oximetry screening had a detection rate of 82.8% for duct-dependent heart disease. The detection rate of physical examination alone was 62.5%. Pulse oximetry also had a substantially lower false positive rate (0.17%) compared to physical examination alone (1.90%).

However, some babies had been detected before discharge examination, meaning that the introduction of pulse oximetry screening in West Götaland improved the total detection of duct dependent heart disease to 92%. This was significantly higher than the 72% detection rate in other regions not using the screening technique. Interestingly, improved detection was achieved by a maximum of just five minutes of extra nursing time per baby.

$1 Million Gift to Support Earlier CHD Detection

Washington, DC (PRWEB ) May 15, 2008 -- The Elsie & Marvin Dekelboum Family Foundation has announced a gift of $1 million to Children’s National Medical Center. The gift will allow the Children’s National Heart Institute to launch a Congenital Heart Defect Screening Study. Children’s National will name a three-bed bay in the new Cardiac Intensive Care Unit in honor of the Elsie & Marvin Dekelboum Family Foundation.

The heart defect screening study will focus on the effectiveness of an inexpensive device called a pulse oxymeter that could help identify more than 80 percent of life-threatening congenital heart defects. If initial findings are validated, the Dekelboum gift will enable Children’s National to promote its use in hospitals across the country and around the world – improving early detection and health outcomes for children everywhere.

New Guidelines Urge Heart Tests Before Taking ADHD Drugs

Excerpts from article by RON WINSLOW
Wall Street Journal
April 22, 2008; Page D1

Children diagnosed with attention deficit and hyperactivity disorder should have a thorough heart work-up, including an electrocardiogram, before taking stimulants such as Ritalin to treat the condition, according to a new recommendation by the American Heart Association.

The advice marks the first time a medical-guidelines body in the U.S. has urged wide use of an electrocardiogram, which charts electrical activity in the heart, to screen a presumed healthy population for abnormalities.

But there is debate among experts about the value of using the test to screen such a large pool of patients to detect a rare condition. The hope is that such a test -- in combination with a comprehensive checkup -- will help to avoid the rare cases of sudden cardiac arrest that have been linked to the widely used medicines.

AN ADHD CARDIAC CHECKLIST

A child diagnosed with ADHD should get a thorough heart checkup, including:

• Patient and family history, with special attention to palpitations, fainting or recent difficulties during exercise.

• A physical, including blood pressure and a check for abnormal heartbeats.

• An electrocardiogram to measure electrical function of the heart.

• If necessary, a consultation with a pediatric cardiologist to discuss important findings.

Source: American Heart Association

"The goal is to improve the care of children, including allowing them to have their ADHD treated and have it done safely," says Victoria Vetter, director of electrophysiology at Children's Hospital of Philadelphia and lead author of the heart association's statement.

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What is CHD?

I had an email conversation with a member of the Mended Little Hearts group this past week, and mentioned that I did not even know what "CHD" or a "Congenital Heart Defect" was until several months after my daughter had been home from the hospital and her heart had been repaired. The other member replied that she had never heard it called "CHD" either, until the last couple of years. Interestingly enough, she is an adult survivor of CHD.

So why is it that we don't know what it is our kids have? We are given a medical diagnosis for missing chambers to underdeveloped (or missing) valves; from narrowed blood vessels to unconnected arteries. We identify ourselves as "a parent of a TGA child" or "an adult with tetralogy of Fallot" - not as part of the larger Congenital Heart Defect Community. Perhaps that is why we are so disconcerted in our efforts to join forces and create an effective awareness campaign.

When I was in the hospital with my child awaiting surgery, I was desperate for information on her condition. I spent hours surfing the Internet for stories of adult survivors, for parents who could relate to the horrors of open heart surgery with their infant, and for inspiration. Never once did I Google "CHD" or "congenital heart defect" (both of which bring up tons of links I could have used!). I looked up "TGA," "Transposition of the Greater Arteries," "open heart surgery" and "pediatric cardiology."

I suggest we start to educate the social workers (who often have extensive interaction with the parents and provide links to support groups) on the importance of being able to identify CHD as being the tie that binds the "broken heart" community together. What do you think? How can we create a better way for newly diagnosed CHD families to find other heart families, websites, resources and information? Send your thoughts to learnaboutchd@gmail.com or feel free to post a comment.