March 12, 2007 was the most terrifying day of Tracy Shields’ life. She took her newborn daughter, Lily, to the doctor for her two week check-up where the doctor discovered an abnormal heart rhythm. After an EKG confirmed a problem, the doctor sent Tracy and Lily immediately to emergency room. Tracy was in a state of panic
Once Tracy and Lily arrived at the hospital, a Pediatric Cardiologist was waiting for them. He hooked her up to a monitor and explained that Lily had Supraventricular Tachycardia (SVT), a heart condition where the heart's electrical system doesn't work right, causing the heart to beat very fast.
“Watching your 4lb baby scream while they held a bag of ice on her face was one of the hardest things I have ever had to do,” said Tracy. “From the ER, we were brought up to the PICU, where we lived for the next two weeks.”
Doctors finally got Lily’s heart into a normal rhythm that was controlled by medication for the first year of her life. When Lily was 8 months old she was able stop taking the medications. She had thankfully outgrown the SVT. She is still checked yearly, but is now a healthy, active seven year old.
Lily’s heart defect, as well as those of countless other Mississippi newborns, could most likely have been detected right after birth, had she been given a pulse oximetry screening.
During the fall of 2014, the Mississippi State Board of Health voted to add testing for Critical Congential Heart Defects (CCHD)to the newborn screening panel. It was then up to the State Department of Health to set the rules that this new provision must follow. In February 2015, all birthing centers across the state received notification that they must test for CCHD using pulse oximetry. Congenital heart defects are the number one killer of infants with birth defects.
Lily's story was also published in the Clarion Ledger newspaper on July 4, 2014.
(This blog article was originally published in July of 2014.)
Update July 2018: Lily is now 11 years old and still having yearly check-ups and doing great! She is a very healthy preteen young lady. Lily loves to read and you can find her always with a book in her hand, sometimes even under her covers after she is suppose to be fast asleep. She has been playing the piano for almost six years now and recently joined her middle school band as a clarinet player. Lily is a fun loving sweet young lady who finds the good in everyone. She is always looking for ways to help someone else. We could not imagine our little family with our our sweet Lily Mae!