Axel is gearing up for his next journey. We travel from Pennsylvania to California for specialized care at Lucile Packard Children’s Hospital Stanford.
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Axel was born with a genetic condition known as 22q. In short, his 22nd chromosome is missing a micro piece that affects all his body systems. He has several body systems that are affected, but his heart took the biggest hit.
Axel was diagnosed with Tetralogy of Fallot, Pulmonary Atresia, and Major Aortopulmonary Collateral Arteries (MAPCAs), a severe congenital heart defect where blood flow to the lungs is supplied by vessels from the aorta rather than the pulmonary artery. It involves a VSD, right ventricular hypertrophy, and complete pulmonary valve atresia.
Axel had his 1st open heart surgery on November 29th, 2021, at 6 months old at Stanford in Palo Alto, California. We traveled from Pennsylvania to California for a life-saving intervention known as a unifocalization. He underwent a 21-hour open heart surgery, and they were able to do a "full-repair." Praise God! A "full-repair" means they were able to fix everything that needed to be fixed and keep his stats stable.
Unfortunately, a "full-repair" doesn't mean he'll never need surgery again. Axel's pulmonary artery is reconstructed with a conduit. A conduit is a tube made of homografts (cadaver valved tissue). These conduits do NOT grow with the body, and they also can become blocked, requiring intervention. This congenital heart defect is lifelong, and he will require monitoring and intervention for the rest of his life.
In November 2022, we flew back to California for his 1-year post-op cardiac catheterization. During that time, he didn't require any intervention, BUT he ended up in the ICU for 2 days because his heart went into heart block. Thankfully, he recovered quickly.
Fast forward to November 2025, we flew back out to California because Axel's conduit was obstructed. Intervention was needed. He underwent his 3rd cardiac catheterization, and during that time, they removed the built-up deposit and placed a stent to open it back up for better blood flow. This will buy him more time before the conduit will one day have to be replaced. Every procedure comes with risk, one being the possibility of the electrical system being damaged. Every procedure sends him into complete heart block.
After this intervention, Axel went into complete heart block. His heart rate was in the 60s (WILD). He was in the ICU for a week, and 9 days later, his heart went back into normal sinus rhythm.
Axel currently lives with a 1st-degree block, but two heart monitors have confirmed he is having episodes of 2nd-degree Mobitz I blocks and 3rd-degree complete heart blocks. Both his local hospital and his surgical team agree he needs a pacemaker in the near future.
So, here we are! Fundraising so we can prepare for his next adventure to California for intervention. And thanks to YOU being a part of our village, you help make it possible to travel for care. We thank you in advance for your purchases.
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