Learning to Live in the Moment When Tomorrow Isn’t Guaranteed
Audrey Pearce is a congenital heart defect survivor and featured survivor for #NoMOHeartDisease, the American Heart Association’s year-long initiative created to increase awareness and reduce the prevalence of heart disease in Missouri. Audrey’s parents, Matt and Yvette, are dedicated supporters of the American Heart Association. Matt is an Assistant Superintendent for the Republic School District. He is also a member of the American Heart Association’s midwest board of directors. Yvette coaches youth volleyball at the Fieldhouse in Springfield, MO.
One relatively blustery afternoon I was the first car at a stoplight and observed a man furiously peddling his bike, obviously in first gear, across the intersection. My eyes were fixed and followed his struggles as the man’s coat-tail dragged the bike tires. His breath chuffed white smoke about his stockinged head. All the while, a trite up-beat tune played in my car against the scene I was viewing; it was all out of synch!
Such is our life, it seems, of having a child with a congenital heart defect. Our life gets out of synch and out of rhythm with what ‘normal’ children are experiencing and doing day by day.
Audrey was born with a congenital heart defect called ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery). What that means is her arteries were connected incorrectly and surgery of that hair-sized artery, as an infant, was necessary. Audrey’s specific defect was rare and occurs 1 in 300,000 children. If not identified, most babies don’t survive their first year of life. Some of the symptoms of ALCAPA include crying or sweating during feeding, poor feeding, rapid breathing, and fussiness, often mistaken for a baby having colic. That’s at least what we thought since we had an 8 and 12-year gap in our inadvertent family planning, was that Audrey was just a colicky baby.
We were blessed to have an amazing pediatric physician and team that covered all the bases when we came in for a weight check. We started our journey at the beginning of one week in March and by the end of that week Audrey had been life-flighted to St. Louis Children’s Hospital (SLCH) for immediate corrective surgery.
We spent 2 grueling months in that hospital and Audrey, thank goodness, will remember none of them. Conversely, Matt and I will always recall some of the tragic events, procedures, the care, the people, the miracles, the support, the relationships forged through tough times and the seemingly incredible fight and stamina of a tiny little girl.
Audrey’s specific case resulted in her having a heart transplant. Not the direction or path we wanted to take, but one that was necessary for Audrey to leave the hospital alive. Transplant medicines and tactics have greatly improved over the years, much to the benefit of the patient through research and development and grants; some of which have been contributed by the American Heart Association. I will never forget two conversations I had while we were at SLCH. One was with Audrey’s surgeon and his efforts in helping me grapple with the transplant process. He explained, “We traded a deadly disease with the management of a chronic one.”
The other conversation was with my husband in not knowing rather we could handle the uncertainties of heart transplantation. I exclaimed, “How can we love and create memories with a child for 5 or 10 years and then have to let them go?”
It was a valid question, as it takes us to where we are today; Audrey is 10. Double digits. She has made it to a marker where infant transplant recipients are gauged on a survival curve of 1, 5 and 10 years. Infant transplant patients are living longer and that improves the odds of accomplishing parental checklists such as walking their children to Kindergarten, pushing them in a swing, helping them ride a bike or things like watching them play a sport. All simple things that are considered ‘normal’, but for a family that has a kiddo with a congenital heart defect, cherished memories and overtly anticipated rites of passage that we may not have an opportunity to check the box on. Therefore, we have loved on Audrey and tried to live in every moment granted. However, there have been several life-flights to SLCH and there have been bouts with cancer due to having a solid organ transplant. There have also been multiple specialists that often get involved in her care. And sometimes a needed trip to the urgent care for something ‘normal’ is NEVER treated as such because her diagnosis precedes her.
So, we often find ourselves peddling, really fast in life, with Audrey, just like the man I saw on the bike. Trying to soak up and enjoy all the things we can with her all the while keeping illness at bay, and managing the chronic effects of her congenital heart defect. It often involves our whole family, and a lot of times, extends further into the community with teachers, friends and even strangers. We go through each day with annoying and repetitive questions at times…”How are you feeling today?....Doing ok?...Does anything hurt?.....Do you need a rest?....What’s the matter? However, sometimes we spin our wheels by playing catch up with her studies, when she misses a lot of school due to being sick. Sometimes, I want to put a bubble around her to protect her from common viruses and the uncommon ones, because Audrey’s immune system is suppressed and will remain so, forever to keep her body from rejecting her heart.
Audrey has been such a blessing in our family’s life. During her healthcare journey, we’ve met the most amazingly talented, kind and gifted people. While in the hospital we also met other families with kids that had a variety of congenital heart defects. They were strong kids that were resilient, and with the help of doctors and nurses, most all recovered, got better and lived their new normal. We all learned that having a congenital heart defect was not an insurmountable mountain we couldn’t climb. Interventions, medicines, cardiovascular research and development play a huge part in helping kids with sick hearts. I have found though, that I lean in agreement with this quote by Toby Morris:
“There is no such thing as a self-made man. We are made up of thousands of others. Everyone who has ever done a kind deed for us, or spoken one word of encouragement to us, has entered into the make-up of our character and or our thoughts as well as our successes.”
There are so many people that have helped forge and chisel away at who we are, standing where we are and loving on us to this very day. Audrey is a vibrant little girl who works so very hard in all that she does and has so much compassion for others. She has a zest for life that makes us smile and beam with pride inside. She is a gift. We are thankful that God entrusted us with this beautiful gift, even if for a little while, as it has made us all the more beautiful; inside and out.
Audrey Pearce 10 CHD = ALCAPA to Heart Transplant
Logan Pearce 22
Emma Pearce 18
Matt Pearce Husband