Before Avery, we had no idea how quickly parents' lives could be turned upside down as the result of an undiagnosed heart defect. We had no idea that heart defects are the number one birth defect, or that they affect every 1 in 100 babies born. We were completely oblivious until it was happening to us, and there was nothing we could do but watch our son fight for his life. It's something I wouldn't wish on any parent, and as a result, spreading awareness for CHD (Congenital Heart Disease) is something I have become very passionate about. Parents of kids with heart defects have to adapt and become the voice and advocates for them. Researching their specific conditions, treatment options, medications, and even continued care for the rest of their lives are just some of the things parents will spend countless hours evaluating.
Last year, we participated in a "Conquering CHD Walk" to help raise awaresness for CHD and provide care and support for other parents just like us going through this for the first time. We are ecstatic to be walking with our son again this year, and would love if you helped us spread the word!
Ways to help:
Make a donation to "Avery's A-Team" through this page.
Share this link with your family and friends.
Join us at the walk to celebrate Avery and all the other heart warriors. If you register for the walk, be sure to select "Avery's A-Team" as the team to join!
A little background on Avery's story:
Avery was born on March 15, 2018 at 5:29 p.m.
He instantly became cyanotic (turned blue due to deficient oxygenation of the blood). The NICU team came into the delivery room and worked on him for a few moments (trying to suction out any mucous or meconium) before realizing something more serious was going on. They asked me (Jenn) if I wanted to hold him really quick before they took him away, so I held our precious newborn for only a few seconds and then they hurriedly rushed him away to run tests. The team at Silver Cross (where I delivered) consulted with the team at Lurie Children's Hospital in Chicago, and it was determined that Avery was born with a congenital heart defect (CHD), which went undetected and undiagnosed throughout my entire pregnancy. His heart defect, Transposition of the Great Arteries (or TGA), is a serious but rare heart defect present at birth in which the two main arteries (aorta and pulmonary artery) leaving the heart are reversed (or transposed). TGA changes the way blood circulates through the body, leaving a shortage of oxygen in blood flowing from the heart to the rest of the body. Avery's diagnosis meant he would need open heart surgery.
Avery was intubated and transported to Lurie via ambulance, where they could better monitor him until his surgery. Avery was only a few hours old when he arrived at Lurie's and had a minor procedure (balloon atrial septostomy) done to enlarge the foramen ovale (the hole between the left and right atrium). This allows blood from both sides of the heart to mix together and help the body get oxygen-rich blood. The balloon is only a temporary measure until the child is ready for their open heart surgery, called Arterial Switch Operation (ASO), which creates a normal circulation of blood in the body by switching the pulmonary artery and the aorta back to their normal positions.
Avery had his ASO at just five days old! We walked our precious, tiny newborn down to the operating floor first thing in the morning on March 20, 2018. Avery handled his surgery like a champ! There were plenty of ups and downs during his stay at Lurie's, but he was discharged on March 31, 2018 (the day before Easter). He came home with oxygen, an NG tube, and a few medications, but was gradually taken off all of those things in the following months. In addition, he also needed physical therapy and occupational therapy within his first year of life to help meet all of his milestones, since he was behind from all the restrictions he had post-operation. But by his first birthday, he was off all medications and even started crawling!
CHD is a lifelong journey, and Avery will have a cardiologist for the rest of his life. As of the beginning of this year, Avery is doing so well that he is down to annual check ups and echocardiograms every two years! Avery is a happy and healthy (almost) 2 year old who is suprassing all of his milestones, is intelligent beyond words, loves to build, and enjoys spending time with his teacher and friends at daycare! We are blessed beyond measure and are so grateful for the medical team that worked day in and day out to save our son's life. He is a miracle and our heart warrior that we are so proud of!
This summer, the Pediatric Congential Heart Association (PCHA-IL) will host their 8th annual Conquering CHD Walk on Sunday, May 17! We'd love to have you join our team for the walk (Avery's A-Team) and/or make donations through Avery's page!
The PCHA-IL chapter is a program of PCHA, aimed at improving the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are.
The Pediatric Congenital Heart Association’s (PCHA) mission is to “Conquer Congenital Heart Disease.” They are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness.
PCHA-IL is 100% volunteer run. Funds from this event will be used to fuel their growing programs in support of the local heart community. This walk spreads CHD awareness, celebrates all heart warriors, and remembers the CHD warriors gone too soon.
For more information about their National Organization, please go to www.conqueringchd.org
For more information about their PCHA-IL chapter, please go to www.conqueringchd.org/illinois