Elijah is Born Abel!

On December 24, 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 often times come along with other medical conditions. 

When Elijah was born he was diagnosed with trisomy21 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. From birth Elijah was hospitalized for exactly 6 weeks. While hospitalized we found our amazing lucky few community. This is a term we refer to in the down syndrome community as being the lucky few who get to experience the magic of a child with an extra chromosome. We also got to experience just how incredibly supportive our down syndrome community is. I lived with Elijah in the hospital for those 6 weeks. People that we didn’t even know made sure that I, Elijah‘s mom, was taken care of and sent personal care items, gift cards, little gifts for Elijah to use during his therapies, baked goods, coffee, the list goes on and on. Elijah was discharged from the hospital at exactly 6 weeks old and the next several months we spent life just filled with therapies and appointments. 

We quickly discovered that hospitalizations for us would never be short ones. A simple visit to the doctors office could easily land us in the hospital for days and often times without warning. A trip to the emergency room guaranteed we were being admitted. We enjoyed our hectic schedule and balanced as best as we could those months leading up to Elijah‘s open-heart surgery. 

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 preop 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,  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. ECMO is life support for those of you who may not know. 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.

During that hospitalization we discovered just how large of a need there is for the volunteers to help with providing basic needs for these families who have hospitalized children. So much so that we created our own social impact project to help aid with that need. 

That is also the time we discovered Born Abel. Born Abel has been an inspiration to us and so many others within our community. Born Abel exists to help normalize the humanity of children like Elijah. Children who are facing mountains of adversity and breaking barriers and limitations daily. It is an organization that celebrates the victories, cheers you on when struggling, prays for miracles, and cries with you when things are bad. They celebrate all children and believe all children are ABEL. Elijah was born worthy, he was chosen, he is mighty and strong, and more than anything he is ABEL.

Elijah’s recovery journey was lengthy and it was very complex. Elijah spent five days on ECMO. After successfully decannulating from the ECMO machine we learned he would require a second aorta repair. The cannula site had begun impeding blood flow within his aorta. At what would have been 11 days postop, our son was undergoing a second open chest cardiac repair. Those days were HARD but I’m very happy to say that Elijah’s cardiac repair has remained stable. He is thriving and growing and is such a happy boy. While there is the possibility for a second repair or valve replacement in the future we have been fortunate enough to likely not need that for many years through medical management.

Born Abel has been there through it all. The community has supported us, prayed for us, and celebrated all of his victories. He has been featured in over 10 of their books alongside countless other medically complex children. He’s even become a published author because of them. Born Abel is a mission that needs your support to keep going. To keep celebrating, honoring, advocating for, and shouting the worth of these children born different. These children Born Abel!