Barrett Lloyd Chenevert was born just hours after his due date in July in 2014 and his parents had no idea that anything was out of the ordinary. Their pregnancy was fairly typical with two normal ultrasounds and no other significant issues. After a long and exhaustive labor that started with a two-hour car ride to the hospital from their home on the North Shore of Minnesota, Barrett made his arrival via emergency cesarean the following day. They spent that entire day with a newborn that behaved exactly like newborns do: eating like a champ, getting his first bath from the great nurses, meeting new friends and family, and filling his diapers. Everything a newborn’s first day should be.
Their joy quickly turned to fear when after 20 hours of getting to know their son, they were told that he had developed cyanosis (his skin turned blue) and his pulse was dangerously low. He was prepped to be air lifted down to Children’s Hospital Minneapolis where he would be diagnosed with Transposition of the Great Arteries (TGA), which is a reversal in the position of the two main arteries (the aorta and the pulmonary) which changes the way his blood circulates through the body, leaving a shortage of oxygen rich blood flowing from the heart to the rest of his body.
Barrett’s parents were thrown head first into the CHD world with little time to process what was happening. They were both on the phone with cardiologists who were describing medications, procedures and risks as they tried to make sense of it all.
They felt the intense need to get to him and to be with him so he knew they were there and that he wasn’t alone. Saying goodbye to him just hours earlier and not knowing if those 20 hours were all she would ever get with him were unbearable for his mom. After she was discharged that afternoon, they made the 3-hour drive to his bedside. He had an arterial switch operation the following morning at roughly 56 hours old that he sailed through with flying colors and was described to his family as “a boring surgery to watch.” We’ll take it! Then, at 13 days old, he went on to have a coarctation repair. Four days later the three of them were getting in the car on their way home.
Today, he is a kind, smart, and fearless dinosaur loving boy who enjoys playing with his friends and his dogs, Bailey and Penny. Barrett has already begun raising awareness and advocating for his disease. His story was included in the 2015 Dear Colleague Letter that was circulated through Congress to gain support for the Congenital Heart Futures Reauthorization Act. He and his buddy, Sully, were asked to represent recipients of blood donation for Memorial Blood Centers on the side of a bus and at only four, Barrett took his first trip to D.C. to attend the 2019 Congenital Heart Legislative Conference and meet with his representatives in Congress. He was even fortunate enough to receive the VIP treatment from Delta Airlines on his flight there by getting to meet the pilots, sit in the cockpit to “fly” the airplane, and have a special announcement made to the passengers about his trip.
Stay tuned for more amazing things to come from this kid!
Read other features about Barrett and his family:
Prevailing Over the Unexpected – May 2016
To My Son, From Your ‘Heart Dad’ Who Couldn’t Be Prouder – June 2017 –
Featured on The Mighty
Heart Month with Barrett – February 2019 – Featured on Speak Now For Kids