Be encouraged by Elijah’s CHD Journey!
“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. We began diving head first into research to learn more about our son’s probable diagnosis and what that would mean for his future. An individual with down syndrome can be affected by many different medical complexities and conditions. That magical extra chromosome can oftentimes come along with other medical conditions.
When Elijah was born he was diagnosed with Trisomy 21 and was also diagnosed with several of those medical complexities associated with Down syndrome. His most concerning condition being his congenital heart defect, a transitional AVSD. An AVSD is essentially a hole in the center of the heart affecting all 4 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 essentially 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. The cannula site had begun impeding blood flow within his aorta. 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!
The ERHF® offered support and helped connect us to other families like ours which helps to encourage us in our journey.
This journey is 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 war against CHD. You will grow to become a stronger and more compassionate person because of your 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. Jesus held my child while he laid on life support and gave him mighty strength to come off of it. 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.”