February 14 is the date to celebrate the love in the hearts of two people. It’s also Congenital Heart Defect Awareness Day. According to the Centers for Disease Control and Prevention, congenital heart defects (CHD) occur in roughly 1 in 100 births in the United States. When I was pregnant with my first child, I never dreamed our family would be part of this statistic.
Twice, my husband and I handed my daughter off to surgeons for open-heart surgeries. My daughter was a tiny 3-month-old the first time this occurred. Less than two years later, we would relive this moment with a toddler who was just as scared as us. When her AV canal defect was surgically repaired, we were relieved. However, our heart warrior would later be diagnosed with an electrical abnormality in the heart called Wolff-Parkinson-White syndrome for which she needed two heart ablations.
Initially, the heart diagnoses came as a shock. My husband and I didn’t know how to process the diagnoses and the treatments that awaited our daughter. Years have passed and time has given us a different and healthier perspective. Today, I share three truths I discovered as a mom of a child with a CHD.
You can trust God through it all.
The simple verse in Proverbs 3 reminds us that we are to trust in God and lean not on our own understanding. It is hard to trust God through situations that don’t make sense. Your brain may search for the reason why your child was born with a CHD. The answers you come up with are rarely satisfactory. It feels like an enormous feat to trust God and put aside all your questions and thoughts.
The heart is a vital organ. When there’s a defect, there can be many complications or forms of intervention that are needed. The future may be full of unknowns. Yet, we are to trust God. Here’s the good part: you can trust God. He knows the future, so we can pray for His guidance and wisdom. You can trust that God is faithful.
Deal with the fear.
We know that God hasn’t given us a spirit of fear, but of power and of love and of a sound mind (2 Timothy 1:7). Fear isn’t from God, but other things certainly bring fear. Our daughter’s cardiologist dutifully told my husband and I the possible risks, complications, and outcomes. All of the negative possibilities allowed fear to swoop in and stay like an unwanted houseguest. The more I meditated on the uncertain future, the more fearful I became.
A sound mind is from God, but it can’t occur while fear is running wild. I had to train myself to shut down fearful thoughts. I tried to refocus on the things in front of me and the things I could control. When my fears were dominating, I spent time with my daughter. The key was to recognize the fear quickly and keep my mind focused on peaceful thoughts. It was a struggle some days. The most helpful thing I did was confide in others. By sharing my fears with other people, the fears seemed to shrink.
Spouses, you can get through this together.
Matthew 19 teaches that the husband and wife become one flesh. The time after a diagnosis is one for couples to stand in unity together. Before our daughter’s first surgery, my husband and I found ourselves in the middle of a sizeable argument over something of tiny importance. I stopped and told him, “I think I’m arguing with you because I am feeling extremely stressed.” He agreed with my realization, and we hugged each other in a worn-out surrender. We had never faced something as frightening as a child undergoing a major surgery. We were both learning how to sort out our emotions and thoughts.
Husbands and wives, I encourage you to work through the CHD diagnosis together. Even if the two of you are dealing with a diagnosis differently, you can explain your position to each other with patience. Stress can cause people to react and act differently. It’s important to know how stress can affect your marriage. Give each other grace through challenging times. Remember that you are stronger together, and you need each other.
Parenting a child with a CHD diagnosis isn’t an easy path to travel. Our family felt unprepared for the journey ahead. We discovered that we don’t have to wander aimlessly as we navigated that aspect of life. God is there to guide, listen, and coach us through the hard twists and turns. His word is there to bring new life to our concerns, and the encouragement to keep moving forward.
On CHD Awareness Day, I thank God for the things He has taught me through my daughter’s heart challenges. I am especially grateful that my daughter has thrived despite them.
Evana is a wife and mother of two children. Since becoming a parent, Evana has spent many hours driving to specialty appointments, praying beside a hospital bed, and learning about her children’s diagnoses. Evana is also a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.
