Grady's Battle with HLHS | Charleston Newborn & NICU Photographer

This is Grady Oliver Evans.

Five months ago Grady was born with Hypoplastic Left Heart Syndrome, a critical congenital heart defect that affects the flow of blood through the heart. The left side of Grady’s heart is underdeveloped which poses a complex set of issues since it’s the left side of the heart that pumps crucial, oxygen-rich blood to the rest of the body.

While there is no cure for HLHS, normal heart function can typically be restored with three surgeries: the Norwood Procedure, the Glenn Shunt Procedure, and the Fontan Procedure.

In Grady’s case, his condition is complex and grave enough that his doctors have begun to discuss another option: a heart transplant.

Grady is currently being treated in the Cardiac Intensive Care Unit of Boston Children’s Hospital.

He has the room to himself. It’s shocking how little space his actual body takes up compared to the wires, machines, and other medical contraptions he requires.

Surrounding him are several reminders that even though he’s been through more trauma than most people see in a lifetime, he’s still just a baby.

Janice, Grady’s mom, shares his story. Perhaps most striking about it all is the uncertainty of what lies ahead. His situation is precarious but is being met with fierce love and a mother doing the best she can to navigate her new role as Grady’s caregiver and advocate.

I wonder about this. About how Janice and all the other caregivers who fill the halls of Boston Children’s manage to do it all.

It’s adaptation. Change required for survival.

These babies, these parents - everyone as far as I can tell, is in survival mode here. Straddling the “real world” and the harsh unpredictability of this 8th floor bubble.

Today, Grady is doing better. He is off oxygen, morphine, one of his heart failure medications, and all blood pressure medication.

Despite the incredible strides Grady is making, Janice shares this sobering reminder via Facebook update,

Heart parents know this all too well, but it's a hard concept otherwise to grasp so I feel the need to say- while yes this is all AMAZING news, these babies are always sick. I'll chat with the Transplant team this week and hopefully get some more information on that front. BUT, with that said.

For now I will try my hardest to not focus on what lies ahead and just enjoy the moment, day by day, and be grateful for what we've been given.

Gratitude. Hope. Love. These are the antidotes for simply surviving. These are what heart families cling to. These are what make life worth living, especially when you don’t know how much time you’ve got.

>> Follow Grady’s Facebook page for more updates,

>> To help support the Evans family visit their Go Fund Me page,