Celebrating Our Heart Warriors – Elijah’s Story
February is Congenital Heart Defect Awareness Month. About 50% of babies with Down syndrome will be born with some form of heart defect. Each week this month we’ll be sharing the story of one of these heart warriors – today, we’d like you to meet Elijah!
“On December 24, 2021, we welcomed our son Elijah into the world. While we were pregnant, we were told that Elijah had a 90% chance of being born with Down syndrome. While we were told about “options” many times throughout our pregnancy, we held tight in knowing the miracle this child was. We began diving headfirst into research to learn more about our son’s Down syndrome diagnosis and what that would mean for his future. We knew that an individual with Down syndrome could be affected by many different medical complexities and conditions, but we were not fearful of his diagnosis. We were excited to begin the journey of having a little extra.
We first got connected with Jack’s Basket while pregnant. We received our basket in the fall of 2021, right before Elijah’s birth. Since then, I have joined the organization as a Regional Lead Parent because I know just how influential having a support system can be while navigating the diagnosis. I also understand just how much of a flashbulb moment receiving the diagnosis can be, and I wanted to help make a difference in the lives of parents that came after me. I have since helped welcome over 30 babies through Jack’s Basket.
When Elijah was born, he was diagnosed with Trisomy 21 and was also diagnosed with several of those medical complexities associated with newborns with Down syndrome. His most concerning condition was his congenital heart defect, a transitional AVSD. An AVSD is essentially a hole in the center of the heart affecting all four chambers. It’s often referred to as the “cross” of the heart being broken.
Elijah had his transitional AVSD repair on July 12th, 2022. We were told to prepare for a lengthier hospitalization. Typically children with Down syndrome are hospitalized anywhere from 2 to 3 weeks after a repair. Upon his pre-op appointment at MUSC, we discovered that his heart defect was far more complex than we had originally thought and this was going to lead to an even longer hospitalization and recovery time.
On the day of Elijah‘s repair, surgery was more complex than his surgeons or his cardiologist expected. We expected a 6 to 8 hour surgery, but Elijah was in the operating room for over 10 hours. They had difficulties getting him off of bypass, so Elijah came out of the operating room on ECMO, which is life support. It was truly the most terrifying time of our lives. After 13 very long hours, we were able to see our boy. It was incredibly difficult to see him in that state.
Elijah’s recovery journey was lengthy and it was very complex. Elijah spent five days on ECMO. After successfully decannulating from the ECMO machine he required a second aorta repair. At what would have been 11 days post-op, our son was undergoing a second open-chest cardiac repair.
I’m very happy to say that Elijah’s cardiac repair has remained stable. He is thriving and growing and is such a happy toddler. He has become such a little man and is now a big brother too! He just turned 3 years old and is living his best life thanks to his surgical team.
This journey can be hard. It is so incredibly hard to watch your child be in pain but I promise you they are STRONG. They are mighty warriors waging a battle against CHD. You will grow to become a stronger and more compassionate person because of your little warrior. Days will be hard but they will also be filled with so much beauty and love. God brought my child back from the hardest of battles. He worked His mighty powers within myself and my husband and brought us comfort and strength to fight on during the days when fighting was incredibly difficult.
If I had one piece of advice to give a new or expectant parent, I would say that while this journey can feel scary, there is so much beauty to be found in it. Does a tough road mean one not worth traveling? This journey may have more twists, turns, and bends. We may stop more frequently to admire the views but this journey you’re about to embark on isn’t one I wouldn’t want to take. Many have traveled before you, paving the way to guide your footsteps. There are many that travel alongside you, and there will be so many others that will follow behind you. Celebrate every step, every bump, and curve along the way.”
Laurin, Elijah’s Mom
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