I cannot image the shock, the fear, the uncertainty that parents face when they are told that their sweet little bundle of joy has a birth defect. Despite the apparently perfect exterior, they are told that the heart inside their baby’s adorable little body… the organ that keeps all other parts of the body alive… is flawed.
I’ve had the honor of watching my friend Erin navigate these hard waters with grace and faith. Her sweet daughter Avalynn was born with Congenital Heart Disease, and through this long journey they have undergone, I’ve watched her faith tested and grown. I’ve watched her advocate for answers. I’ve watched her love unconditionally and fight fiercely. She and Avalynn are inspirations to everyone that knows them… and I hope they are an inspiration to you as well!
This week is Congenital Heart Disease Awareness Week, so I’ve asked Erin to share Ava’s story as a way to raise awareness. This sweet girl has already undergone heart surgery and will need another surgery in the future. Please read her story below and if you feel led to donate, I have a link at the bottom of this page to help support The Children’s Heart Foundation.
Perhaps, one of the most important thoughts that crosses a mother’s mind when they await the arrival of a new baby is “health.” Will they be healthy? Will their little organs function just like they’re supposed to? I remember counting Avalynn’s ten fingers and ten toes, checking all of the vital parts and staring into her beautiful blue eyes; relishing in the fact that I was a mother to a, seemingly, perfectly happy and healthy baby.
Two days after Avalynn’s birth, her pulse oxygen (or the level of oxygen that your blood is receiving, thus dictating whether organs furthest from the heart are receiving nourishment that they need) dropped dangerously low. It didn’t take long for her to receive a diagnosis of a Congenital Heart Defect or “CHD.” The question was: What kind was it?
Doctors and nurses seemed baffled and, the fact that we had delivered Avalynn at a small community hospital only made the situation more stressful. The baby who, all along had been so healthy, now had this unexpected, life-threatening diagnosis.
Several phone calls to a surrounding, major university hospital and conference calls with specialists while our daughter lay in the NICU left us with a loose diagnosis that would later become firm. Avalynn had Ebstein’s Anomaly of the Tricuspid Valve, along with an Atrial Septal Defect.
Ebstein’s Anomaly is rare, very rare. It affects only 1 in every 200,000 children who have CHDs. It is a condition where the Tricuspid Valve is misplaced or collapsed in the right ventricle. The leaflets of the Tricuspid Valve are also malformed. These direct the flow of blood throughout the heart and, because of their malformation, blood kind of goes where it wants. The additional Atrial Septal Defect (which is essentially just a hole between the upper two chambers of the heart) allows for leakage and backflow of blood.
We took Avalynn home with this diagnosis and prayed God’s safety over her. We didn’t know how else to handle the diagnosis. We learned as we went that Ebstein’s was unpredictable at best and that it presented itself in different ways in different children. Ava was anatomically severe and she was symptomatically mild.
The Lord has protected Ava and has left her mildly symptomatic until late last year when we began noticing her symptoms of blue skin (cyanosis) and exhaustion. We knew it was time for surgical intervention, as badly as our hearts ached at the thought of it. Confirmation from her cardiologist and her surgeon at the Mayo Clinic (a renowned trailblazer and the top surgeon for Avalynn’s condition) encouraged us to schedule the date.
Avalynn recently came through her first open heart surgery. Unfortunately, the procedure that we hoped would be enough for Avalynn, alone, ended up not working and a second procedure was paired with it. For this reason, Avalynn will require at least one additional operation, sooner rather than later, and likely several throughout her life, depending on what her heart does.
However, we were told that, had we waited, Avalynn would have been left with less options and it is more likely that a heart transplant would be needed. We are so grateful for God’s protection, His wisdom and guidance in our decisions to trust our instincts when we began seeing change in our little girl.
Through it all, God’s grace has been prevalent, His peace has been unreal and He has lavished His love on Avalynn and on my husband, Patrick, and I, just as He tells us He will in His Word. His strength is perfect when our strength is gone.
Although, I would rather Avalynn not have a condition at all, her condition has affected us positively in so many ways. Firstly, it has strengthened our relationship with the Lord; drawing us closer to Him and, essentially, forcing us to be fully dependent on Him. It has also allowed us to branch into the word of philanthropy. Every year, since Avalynn has been born, we have chosen a worthy non-profit, held fundraisers and allocated all proceeds raised to one or more organizations. It has been such a source of joy for us, as parents, and an opportunity for learning for Avalynn. It has allowed us to teach her that we are more than our circumstances and that we can take any situation and use it to bless others. Lastly, Avalynn’s condition has moved Patrick and I into the certainty of homeschooling. Like most potential homeschoolers, we have had our self-doubts; mostly wondering if we’re capable of the responsibility of Avalynn’s education but, I have felt pulled to this ministry since Ava was small. As a stay-at-home mother, I feel strongly that it is my duty to take on all of the roles of care for Avalynn; including that of her teacher. It was a very real calling for me. I understand that this isn’t a calling for everyone but, I try not to silence the call of the Holy Spirit when He’s encouraging me, specifically, to a certain place or responsibility in my own life.
Ava’s diagnosis requires some proactiveness. Trying to eliminate as much exposure to sickness (especially respiratory sickness) is a necessity. Kids get sick but, certain viruses can really wreak havoc on a weakened cardiovascular system. Many people teasingly refer to heart moms as “germaphobes” which isn’t a stretch! Ha! In addition, Ava requires lots of cardiac monitoring and, now we know that she’ll require at least one more operation during her school age. Because of this and my husband’s career as a Marine, keeping her learning base within the home makes the most sense for our lifestyle. In so many ways, I feel like the Lord has just lined everything up this way. It’s so neat to see His hand in every aspect of our lives. It’s hard to grasp His presence in some of the more tumultuous moments but, when the calm comes and we can look back from safety, it is breathtaking to see what He was working in our lives all along.
All in all, we have been so very blessed. Avalynn continues to defy medical odds. She is a beautiful, spunky, smart, helpful, tender-hearted little four-year-old who loves all of the normal things kids love. We look around in the CHD world and see so many others who are in worse condition than we are and, for that reason, we strive to give of ourselves and our time to further research and to increase the aid that some of the less fortunate families in similar circumstances as ours do not have.
We look forward to where God’s will takes Avalynn and how He continues to work in our lives, as well!
Erin Kent (Avalynn’s Mommy)
There are 40,000 babies born each year with a form of Congenital Heart Disease, which makes this the most common birth defect in the world. If you would like to donate to help with the research, please click the link below:
Donate: The Children’s Heart Foundation
Enter a giveaway: Little House Became a Home GIVEAWAY
