“Our story started with what we thought would be a routine appointment… until we were told our baby needed to be delivered immediately. During my emergency C-section, they lost his heartbeat, and within minutes Alex was born fighting for his life.

Alex was diagnosed with Tricuspid Atresia, Pulmonary Atresia, and a severely hypoplastic right ventricle. At just 9 days old, he underwent his first open-heart surgery and placement of his BT shunt.

7 days later, his shunt clotted completely, stopping blood flow to his lungs. He coded and was resuscitated for 25 minutes before being placed on ECMO for the first time. That was also the first time we were told to prepare to say goodbye.

Only days later, he crashed again. Another emergency surgery. Another time on ECMO. During surgery, doctors discovered a severe fungal infection damaging his heart and pulmonary arteries.

Two days later… it happened again. Another emergency surgery to replace his shunt with one twice the size.

Just when we thought we could breathe, Alex suffered a brain hemorrhage. He underwent brain surgery for an EVD drain, followed days later by another surgery for VP shunt placement.

Months later, while preparing to finally go home, Alex suddenly began severely desaturating. After an emergency cath lab procedure turned into a 12-hour emergency surgery, doctors discovered the fungal infection had destroyed major areas of his pulmonary arteries and shunt. Alex was placed on ECMO for the third time while surgeons reconstructed both pulmonary arteries and placed a new shunt. His body had even started creating new pathways just to keep blood flowing to his lungs.

He spent days on ECMO with an open chest before finally becoming strong enough to come off support, close his chest, and later be extubated.

Most recently, after noticing subtle neurological changes myself, we discovered his VP shunt had become blocked, leading to emergency brain surgery once again. 2 days later tested positive for Rhino/Entro. 2 weeks later he was extubated and doing amazing.

Alex has survived cardiac arrests, ECMO three times, multiple open-heart surgeries, brain surgeries, infections, emergency intubations, and more hospital stays than we can count.

But through every single setback… he keeps fighting.

Alex has taught us what true strength, faith, and resilience look like.
He is our miracle, our warrior, and the strongest little boy I know”