On February 9, 2016 at Nacogdoches Medical Center, a bouncing baby girl named Indy Ross was welcomed into the Deason family’s world. Greeting her on this side of heaven were her mommy, Amanda, a nurse at Libby Elementary, and her daddy, Sam, who works for Baker Hughes. Indy also was greeted by big brothers, Gage, 13, and Jake, 10, along with three-year-old big sister Presley Rae. Everyone was happy and healthy and anxious to get their lives started with their new baby.
As scheduled, Indy went to her week-old check up with her pediatrician, Dr. Procell, and she was right on target. Everything was perfect, but in a blink of an eye the Deasons’ world changed. On February 17, 2016, Indy’s parents were at home when they noticed Baby Indy didn’t look or act right.
They knew there was something wrong and immediately headed for the emergency room. During their stay at Nacogdoches Medical Center everything “checked out” okay. The doctors were unsure as to what was causing her symptoms, but Amanda had a “mother’s instinct” and insisted that something was not right. Baby Indy’s condition worsened, and along with her abnormal breathing, her skin tones had changed. Before they knew it, Baby Indy was in respiratory distress. Doctors, nurses, and respiratory specialists rushed in the room to stabilize the nearly lifeless infant. Baby Indy was intubated and prepared for Life Flight to Willis Knighton in Shreveport. While their helpless infant, supported and monitored by machines, was boarding a helicopter, Amanda and Sam began the frantic drive from Nacogdoches to Shreveport.
When Indy arrived in Shreveport, the doctors performed an echocardiogram on her heart. She was diagnosed with a Coarctation of the Aorta and stabilized enough for another Life Flight to Children’s Medical Center in Dallas. During the flight Indy began going into multi-organ failure, and the doctors had to resuscitate her. Meanwhile, of course, the tears and prayers had already been abundantly flowing from the eyes, lips, and hearts of the family for God to save their baby. Once in Dallas, Baby Indy was stabilized for four days until her tiny body was strong enough to undergo heart surgery. Lying in the hospital crib, she looked like a pitiful baby puppet with all the wires and monitors attached to her tiny body. With countless prayers, God’s love, and the wisdom and steady hands of the surgeons, Baby Indy made it through surgery with no complications. On March 7, 2016, with a feeding tube inserted, Indy was released from the hospital and reunited with her siblings. The Deasons had a miracle baby.
Indy’s story touched the life of a family friend and registered nurse, Carriston Hendricks. She thought about all of the other babies that didn’t make it home. What about all of the other mothers that didn’t have the “intuition” that Amanda had? How could Indy’s story help future generations? These questions began to plague Carriston. She understood that one thing that saved Indy, other than Amanda’s intuition and persistence, was the echocardiogram done in Shreveport which identified the problem with her heart. This epiphany became the driving force behind a petition for “Indy’s Law.”
The premise of Indy’s Law is for newborn screenings in Texas to include echocardiograms. Currently, Texas state screening only includes pulse oximetry and blood pressure screening, and these screening tools are not sufficient to identify every congenital heart defect (CHD). Pulse oximetry is not as effective in the early identification of CHDs such as, arortic arch atresia or hypoplasia, coarctation of the aorta, interrupted aortic aortic arch, double-outlet right ventricle, Ebstein anomaly, pulmonary stenosis, atrioventricular septal defect, and ventricular septal defect. These are considered secondary targets of pulse oximetry CHD screening in newborns and one of which could have proven fatal to Indy and many more babies like her in the future.
Texas Law states that babies delivered at a birthing facility must be screened for Critical Congenital Heart Disease (CCHD). CCHD is any abnormality in the structure or function of the heart that exists at birth that causes severe, life-threatening symptoms and requires medical intervention within the first few hours, days, or months of life. Indy had a coarctation of the aorta, which means the aorta is narrower than usual. If the coarctation is not diagnosed and treated, it can lead to devastating consequences such as brain injury or even death. Indy struggled with her aorta shrinking for eight days before she was taken to the hospital. The blood supply she had to keep her alive was not pumping through her tiny body, and she was gasping for oxygen. She was dying.
Why now? Why is this so important? Did you know congenital heart defects are the most common birth defects in the world? Did you know babies are dying because their heart defect was not detected in time? Every fifteen minutes a baby is born with a congenital heart defect, or approximately eight out of 1,000 live births. What if your baby was one of the eight? According to the children’s heart foundation, nearly 40,000 babies, or one in 100 is born every year with a congenital heart defect (CHD). Congenital heart defects are the leading cause of infant death in the U.S., accounting for 30% of deaths. More than 50% of all children born with a CHD will require at least one invasive surgery in their lifetime. Congenital heart defects are about 60 times more prevalent than childhood cancer. Surely there is more that can be done to lower these figures and prevent loss of life. Could it be something as simple as a non-evasive echocardiogram? We have the technology. Why can’t we use it? The answer might surprise you.
Echocardiogram pricing among Texas providers fluctuates from $10,664.97 at Doctor's Diagnostic Hospital in Cleveland, TX to a mere $135.31 in San Antonio, TX at Advanced Imaging Services. The same life-saving and advanced technology with astronomically different costs! The costs of life flight, loss of work, hospital stay, medication, hotels, and food are outrageous and well beyond the costs of a simple, non-invasive echocardiogram. The Deasons are no strangers to medical bills, and Indy’s heart defect could not have been prevented, but it could have been detected sooner, cutting the cost of care exponentially.