Congenital heart defect

The joy of welcoming their first baby turned to concern for Laura and Brad Smith of Prattville, Ala. when their newborn daughter, Aria, was diagnosed with a congenital heart defect known as transposition of the great arteries. It’s a rare defect where the two main blood vessels coming out of the heart—the aorta and the pulmonary artery—are transposed, or switched in position. The aorta is positioned in front of the pulmonary artery instead of behind it. The condition is present at birth.
 
Facing the unexpected

Aria was born in Montgomery, Ala. by c-section on October 29, 2014, and was almost immediately taken to the NICU because she was having difficulty breathing. Doctors thought it was possibly fluid on her lungs, but they soon found out it was a congenital heart defect. She was transferred by ambulance to the University of Alabama at Birmingham (UAB) and then transferred to Children’s of Alabama for surgery when she was a week old. 
 
“At first, we were surprised and kind of incredulous, since we had previously experienced a miscarriage, so the thought that we had come this far to only potentially experience another loss was difficult to say the least,” Laura said. “We had our moment of crying and processing, but then we leaned deeply into our faith and our role as new parents, and trusted God’s hand through the process, believing that no matter the outcome, His perfect will would be done, even if that meant losing our baby, since we really didn’t know what to expect from all of this in the very beginning.”
 
Surgery

During the surgery, the aorta and pulmonary artery were surgically disconnected and reattached to their correct positions—the aorta was connected to the left ventricle (to carry oxygen-rich blood to the body) and the pulmonary artery was connected to the right ventricle (to carry oxygen-poor blood to the lungs). The tiny coronary arteries, which supply blood to the heart muscle, were moved from the aorta's original position to its new location.
 
Aria spent three weeks in the hospital. “We could not have asked for a better place for our baby to be, having this type of care administered. Every person was so knowledgeable, capable and truly seemed to care about the work they were doing and the patients they were caring for,” Laura said. “We never felt like we were in the way while they were coming in frequently to check on Aria and care for her continuous needs during recovery. They helped us feel more comfortable as first-time parents by showing us how to do some of the things we wouldn’t have learned if we had gone straight home from the hospital after having our baby.”
 
Recovery at home

“The hospital staff helped us gain confidence in caring for her after surgery the way she needed to be cared for,” Laura continued. “At home, we got used to feeding her through special bottles, and she had to have thickened formula that was mixed with rice cereal, which caused some gastrointestinal issues, which were pretty difficult for the first several months of her life. Krissie Hock, who was basically like our personal guide through the whole journey, told us to take a good look at our baby before she went through her surgery, because that was the last time she would look like that (without an incision/scar). I’ll never forget that moment and how special it was that she got us to do that, because we might not have thought about it otherwise and missed such a special opportunity.”  
 
A Bright Future
 
Aria, now 10 years old, is thriving. Laura explained that she has needed to work on her core strength, since she was limited in that area for the first couple of months of her life, but she has improved with that as she’s grown. “She is a difference maker, in that she touches people’s lives all the time, by the way she interacts with them and cares about them so much. She loves drawing and takes after her daddy in that area. She is a great singer, but doesn’t truly believe she is, so we’re working on her confidence with that. She has a natural ear and loves teaching herself new songs on the piano, mostly playing by ear and refusing to learn to read music. She also enjoys PeeWee cheer.”  
 
Truly grateful
 
Laura believes that if you are a person of faith, it’s important to lean into that during challenging times. “It’s the biggest reason we got through the process like we did. We didn’t look at Aria’s journey, or our own, as a tragedy or something that we couldn’t believe was happening to us. We viewed it with purpose, and it completely changed the path of our lives from that point on for the better. “We looked for God’s purpose in every encounter we had while at Children’s and tried to use it all for good. Look to the people that are placed over you and your child’s care as an asset, and truly try to learn from them and allow them to have a place in your heart.”