In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).
Today, Elijah’s mom, Jenny, will share his story.
When the doctor told me Elijah was almost here and it was time to push, I didn’t expect to have tears of alarm. I should have been overjoyed that I was finally going to meet my firstborn son, but I knew that for Elijah, his exit from the womb would mark the start of a fight for his life. Elijah was diagnosed at his 20- week anatomical scan with a congenital heart condition known as transposition of the great arteries, where his two main arteries out of the heart were switched. Several teams waited for him after he was born to immediately wheel him to his first heart procedure, a balloon septostomy to create a connection to allow oxygenated blood reach his body. Six days later, which we came to call his second birthday, he had his life saving open-heart surgery, in the form of an arterial switch.
Our little “Brave Heart” fought for three weeks at Children’s National Health System in Washington, D.C. There we met compassionate nurses and a medical team, including Mary Donofrio, MD, director of the Fetal Heart Program, cardiovascular surgeon Pranava Sinha, MD and cardiologist Anita Krishnan, MD. We watched in admiration as they meticulously monitored Elijah, applauded his accomplishments, and anticipated any hiccups in his care. We met many families in the Cardiac ICU who were experiencing some of the worst days of their lives. We bonded over tears, coffee and updates all while praying in desperation that our children would continue to recover with the spirited courage that they were destined for.
Elijah is now three months old and home with us. We continue to cheer him on as he smiles, coos and rolls. The people we met and the prayers we received while at Children’s allowed us to walk out the door feeling empowered instead of wounded. We still remain in awe that, with a dedicated team, our child can come home with no restrictions after such an intense first month of life.
For those meeting families with congenital heart defects, know that they are also forever marked by the scar that their child has on their chest. For us and Elijah, it is a battle scar highlighting a time of faith and resilience. Parenthood brings a lot of “what-ifs,” but through Elijah’s story, we are learning that we don’t have control over all details of our child’s story — we are responsible for teaching them how God brings beauty from ashes. We are so thankful for Elijah’s life and his story, and we know that it is not the last time that we will hit our knees in prayer for our children.
More information about congenital heart defects can be found at the Center for Disease Control & Prevention (CDC).