Down Syndrome, Atrioventricular Canal Defect Beaux Waites
Energetic, full of joy and a million-dollar smile is the best way to describe 5-year-old Beaux Waites. Beaux is also a fighter, having been diagnosed with Down Syndrome and a heart condition called atrioventricular (AV) canal defect.
At 4 months old, Beaux had open heart surgery after spending more than a month at Children’s of Alabama for respiratory syncytial virus (RSV). His parents, Lauren and Shellie, made the decision for him to have the surgery. “Thank goodness we did, because when they opened him up, his heart was enlarged and nearly filled his entire chest cavity,” Lauren said. “He could have easily gone into heart failure at any second.”
Most people with Down syndrome who have AV canal defect have only one hole in the heart that can cause problems with the valves that regulate blood flow . Beaux had four holes – three of which were corrected by Children’s doctors.
“After his surgery, I walked into his room,” Lauren said. “There were so many machines with tubes running to and from our baby and people coming and going from the room. All without skipping a beat. The staff at Children’s was like a well-oiled machine. It was amazing!”
Beaux celebrated his five-year heart surgery anniversary in November 2017. He will eventually have another surgery to close the remaining hole in his heart. Since birth, Beaux has had seven surgeries for various health issues , including sleep apnea, which was remedied with a tonsillectomy and adenoidectomy. Before the surgery, Beaux woke up 29 times a night. “The doctors and nurses at Children’s are good about explaining things on a mom and dad level. They work closely with you and want to hear what you have to say. It is truly a team effort,” Lauren said.
Beaux often has respiratory issues because of a tiny airway that almost swells shut when he is sick. “Sometimes when he is sick, he just needs that extra push of oxygen to keep his O2 sats [oxygen saturation] up in the normal ranges,” Lauren said.
Beaux has a special bond with his 10-year-old brother, Matthew, and likes to play t-ball at the park. Like most boys his age, Beaux loves anything with wheels. On a recent visit to Children’s, he even found the Red Wagon that is dedicated to him and rode around in it. He also enjoys books and has a fascination with Shrek and Elmo.
Attending school has been a good experience him. “His teachers and the students are all very supportive of him,” Lauren said. “He even has a peer moderator who has become one of his best friends.”
Beaux doesn’t seem to meet a stranger either. “When he is out in public, he thinks he is the mayor of everything! He walks around and meets people everywhere he goes,” Lauren said. “From the very beginning, he was our new normal .. the missing piece to the rest of our lives.”