Looking at 7-year-old Teagan Smith today, one would never know what she went through during her first several months of life.
“I had a completely normal pregnancy,” states Teagan’s mom, Alex. “I had a total of three ultrasounds and was told everything looked perfect. Oddly though, my whole pregnancy, I just had this crazy feeling that something was wrong. I worried about my baby every single day.”
Teagan was born on April 12, 2013 at Anderson Hospital in Maryville, IL. It was an uncomplicated labor and delivery, and Alex was able to hold and feed Teagan right away. About an hour later, however, nurses and doctors noticed Teagan looking “bluish” in color. They checked her oxygen saturations and found them to be much lower than normal. She didn’t respond when they gave her oxygen, and a chest x-ray quickly followed. “They told me that all of Teagan’s organs were on the wrong side, and that she would have to be intubated and taken to SSM Health Cardinal Glennon right away.”
Teagan was born with a heart defect called Transposition of the Great Arteries with Ventricular Septal Defect and Pulmonary Stenosis. She also has dextrocardia and Situs Inversus. That means that her heart and all her organs are on the wrong side. At five days old, Teagan had a balloon put in her heart through a cardiac catheterization in the Pediatric Hybrid Cardiac Catheterization Suite at SSM Cardinal Glennon. The balloon would help her blood and organs get most of the oxygen that they needed until she could grow a bit bigger and have a larger surgery. She recovered well and was able to go home at 12 days old.
“It was all so surreal. The day she had her surgery was my 18th birthday. Having a baby is an experience enough, but I don’t think anyone can really prepare you for seeing your baby sedated with so many tubes and wires and machines. I didn’t really have a choice but to accept what my baby was facing – but I remember the staff doing everything they could to build my trust and put me at ease. They drew pictures and explained things the easiest way possible, and the nurses always made sure to help translate the medical language into words I could understand,” said Alex. “I was so happy I could stay the night with her every night in the NICU. It made an uncomfortable, scary situation much more comfortable.”
Following discharge, Teagan had home nurses 3 times weekly at first, for weight and oxygen saturation checks. She also had visits to the cardiologist twice monthly. This was “normal life” until Teagan was about 7 months old. The day before Thanksgiving, Teagan had a routine visit to the cardiologist. Her oxygen saturations were only in the 60’s at that check-up, and her color was off, as well. Her pulmonary vein was closing up and causing less blood flow. “We spent the holiday in the hospital for another balloon procedure,” said Alex. “We all hoped this could get her through Christmas without doing her bigger surgery. And it did!”
At 9 months of age, Teagan had her first open heart surgery, called a “Rastelli” procedure on January 6, 2014. A patch is used to close the VSD (ventricular septal defect) and direct oxygenated blood from the left ventricle to the aorta. The pulmonary valve is surgically closed, and an artificial conduit and valve are constructed from the right ventricle to the pulmonary artery, allowing deoxygenated blood to travel to the lungs for re-oxygenation.
“I will never forget her surgery day, because there was a horrible snowstorm the night before. I couldn’t believe it because her surgeon even spent the night at the hospital. He was determined not to have to cancel her surgery,” recalled Alex. “Her surgery lasted 10 hours. She spent 6 days in the Pediatric Intensive Care Unit, then another 6 days on the Transitional Care Unit,” said Alex. “She came home on January 18. I was told her conduit should last at least 5 years, but that she would eventually outgrow it, and need it replaced.”
After her Rastelli procedure, Teagan had monthly visits with her cardiologist. Eventually those visits became every three months, then every six months, and now they are just annually. “We knew that this was something we would have to deal with for life. But Teagan is so strong, and I know whatever we face in the future, she can get through anything,” says Alex.
Currently, Teagan is 7 years old, and living her best life! “She loves books, unicorns, slime, nerf guns, and Barbie’s; dancing, art and movies – just to name a few,” said Alex. “Her most recent check-up was January 2020, and she is scheduled to be seen in January 2021. We know another surgery is pending, but we know we’re in good hands.”
Alex adds, “It is always so welcoming at Glennon. Teagan is never scared to go there, and everyone makes it such a good experience. I am honored to share our experience and do anything I can to help the hospital, and my family is excited to work with Children’s Miracle Network to do just that!”