Benji G.

In October 2024, baby Benji was diagnosed in utero with Hypoplastic Left Heart Syndrome (HLHS), a rare and life-threatening congenital heart defect. The months following were spent monitoring him weekly and making decisions about his future care. Four months later, mom went into labor and was transported 4 hours north to UF Health's Shands Children's Hospital in Gainesville, where Benji was born and immediately moved to the care of the Pediatric Cardiac Intensive Care Unit (PCICU).

Nine days later, he had open-heart surgery, known as the "Norwood," the first of three planned operations. After weeks of recovery in the hospital, Benji was sent home for the risky "interstage" period, a timeframe of about 4-5 months between scheduled operations. Daily monitoring and weekly checks continued for months as mom and dad struggled with him through pain, eating challenges, depleted stats, and frequent medicine adjustments.

At five months old, his first surgery began to fail a bit earlier than expected, and he had a small operation to keep him safe until his second major surgery could be scheduled. One month later, at six months old, we returned to Shands and Benji underwent his second open-heart surgery, the "Glenn." He did amazing and, after only 5 days in the hospital, was discharged. Two post-op complications required two extra hospital stays over five weeks. Thankfully, since his last discharge in September, he has not had to return to the hospital and is doing well.

The next few years will focus on catching up with his development and preparing for his third open-heart surgery, the "Fontan," scheduled for when he is three years old. After that, he will be monitored until his heart begins to fail once again, typically in teens years, at which time he will be placed on the waiting list for a heart transplant. 

About Benji:

Getting a smile out of Benji has not always been easy. He has been through so much, and his temperament is naturally more somber. But as he ages and his health stabilizes, he smiles more, and when he does smile it feels like fireworks. He loves to watch his big brother, Edmund, who can always get a belly laugh out of him. He also is currently obsessed with eating paper, the color red, and trying to scoot. Our hope is that Benji's story is an inspiration to other warrior families facing all kinds of health challenges, and that through him we can raise awareness about infantile and pediatric congenital heart defects, especially one as rare as HLHS. Kiddos like Benji need all the love and help and support they can get! Thank you for choosing to support Benji and his heart warrior journey!