A simple test could save a child’s life, but hospitals in Kansas are not required to offer it. This inexpensive, easy, lifesaving test to detect critical congenital heart defects, known as pulse oximetry, is required in more than 30 states across the country including Missouri. The Kansas Department of Health and Environment currently recommends that pulse oximetry not be incorporated in the statutorily required screenings.
“In partnership with the Kansas Department of Health and Environment (KDHE), the American Heart Association, along with other organizations across the state, and passionate congenital heart defects families, are currently working on a quality improvement program focused on pulse oximetry that they hope to unveil later this year,” said Kevin Walker, regional vice president of advocacy for the American Heart Association. “While our association supports the development of a quality improvement program, we do not believe it should delay mandatory testing of all newborns.”
Pulse ox screening is a non-invasive, inexpensive test that can potentially save a child’s life by detecting more than 90 percent of all critical congenital heart defects.
Kansas (Concordia) resident Kim Reynolds had an uneventful pregnancy. Following the birth of their third daughter Breckyn, they noticed something wasn’t ‘quite right.’ However, no one at the hospital seemed concerned and they sent the Reynolds home with their newborn baby girl. Weeks later, the entire family attended their local Harvest Festival when Breckyn turned blue. Horrified, Kim Reynolds remembers walking up to the local physician saying, “What’s wrong with my baby?!....please help!!”
Breckyn was immediately transported to the local hospital then sent by ambulance and flat-lined multiple times on her way to the airport. Quickly thereafter, she was life-flighted to Children’s Mercy in Kansas City. “I found myself envisioning her funeral instead of kissing my baby as she woke up,” Kim noted. “Her organs were failing her and my newborn baby was dying in front of my eyes.”
“When Breckyn arrived at Children’s Mercy, we discovered she had a critical congenital heart defect know as transposition of the great arteries,” noted Dr. Stephen Kaine, pediatric interventional cardiologist with Children’s Mercy in Kansas City. “Most often, this type of heart defect can and is detected within the first 48 hours of life IF a pulse oximetry screening is performed.”
A routine procedure can correct the issue within the first few weeks of life, but in Breckyn’s case, it was too late. Dr. Kaine explains, “There is a small window in which a correction procedure can be performed and have effective life-long results. Unfortunately in Breckyn’s case, while we continue to do everything we can, she has a terminal diagnosis associated with a lack of early detection. Simply put, if Breckyn had been given a pulse oximetry screening within the first 48 hours of life, treatment of her heart defect would have been very different and likely allowed her a long, healthy and vibrant life.”
To date, Breckyn Reynolds has undergone four open-heart surgeries and 11 heart catherization procedures. She is now five years old living with a terminal diagnosis – doctors don’t know what the future holds or how long she has to live. She takes medicine twice daily, is on oxygen nightly, can’t run, play sports or be around anyone sick and is seen by the cardiologist every three months. Additionally, the Reynolds family has medical bills totaling more than $2 million.
When Breckyn asks her mommy and daddy, ‘Why did God make me with a broken heart?’ Kim replies to her daughter, “In hopes that you will pave the way for other babies to have brighter futures and to give other mommies and daddies the assurance that their child will be okay.”
The American Heart Association plans to continue their work with KDHE and their CCHD Work Group on the pulse oximetry quality improvement project, but notes that mandatory testing and a quality improvement program are not mutually exclusive. Walker explains, “They can, and should co-exist. A quality improvement program will certainly improve testing and data collection but does not guarantee ALL babies born in Kansas will be tested. That is why the American Heart Association supports required testing and it should begin immediately. The delay in rolling this out means we are placing the littlest lives at unnecessary risk, like that of Breckyn Reynolds.”
“Pulse Ox screening can help detect problems before symptoms appear,” explained Dr. Kaine. “Oftentimes, the symptoms of those conditions are not evident at birth. With infants going home sometimes as early as 24 hours after they’re born, they may not start showing those signs of turning blue, having a heart murmur that can be heard or having breathing issues before they leave.”
The test consists of sensors placed on a newborn’s hand and foot to check blood oxygen levels. If levels are too low, additional tests may be conducted that aid in detecting critical or possibly life-threatening heart defects that might otherwise go undetected.
“The equipment is in the hospitals. It takes less than five minutes, less than $4 to administer and is as invasive as a Band-Aid. It just makes sense,” Dr. Kaine said.
One out of every 100 babies is born with a congenital heart defect, the number one birth defect and a leading cause of infant death in Kansas. According to the Centers for Disease Control and Prevention, about 7,200 children are born with critical congenital heart defects each year. As many as 1,000 of those are discharged without the defects being detected.
If Kansas residents want to learn more or want to be more involved with this issue, contact the local American Heart Association at (913) 652-1913 or visit www.heart.org/KC. Expecting parents should ask their birthing facility if they currently test all newborns for congenital heart defects using pulse oximetry.