Surrounded by Love: John Levi’s Story

Haylee and David Huffman’s story is rooted in faith, love, and the close-knit community of the Emerald Coast. They met in Destin, Haylee’s hometown, and were married in Santa Rosa Beach sixteen years ago. There, guided by a deep calling to serve, they planted a church that David now pastors. Their four children - Asher, Hattie, John Levi, and August - were all born at Ascension Sacred Heart Hospital Emerald Coast. This is John Levi’s story—from the heart.

On their ninth anniversary, Haylee and David received joyful news: they were expecting their third child. At the twenty-week ultrasound, everything appeared normal. In their previous pregnancies, they had declined routine genetic screening. This time, for reasons they still can’t fully explain, they chose to proceed.

That decision led to a life-altering phone call.

A nurse shared that the screening revealed a high likelihood of Trisomy 18, also known as Edwards Syndrome, a severe chromosomal condition often described as incompatible with life. More testing would be needed to confirm the diagnosis, but in that moment, everything changed.

David was at the church when Haylee called. Through her tears, he could barely understand her, but one phrase came through clearly: Trisomy 18. As he searched for answers, one word seemed to eclipse all others:  fatal.

They met at the bay that day. Beneath a bright, beautiful sky, they sat in grief, watching the water, praying, searching for understanding, and holding onto one another. Scripture filled David’s thoughts, especially the words of the Psalms: “I cried out to God for help… When I was in distress, I sought the Lord.”

Soon after, they met with a genetic counselor, who explained there was a one-in-ten chance the diagnosis was accurate. But during a detailed ultrasound with high-risk specialist Dr. Roque, their fragile hope began to fade. As they watched the screen, the signs were unmistakable. They looked at each other, tears confirming what words could not. Further testing, including an amniocentesis, revealed they were carrying a baby boy.  They named him John Levi.

In the weeks that followed, grief came in waves, unpredictable and overwhelming. “There are no adequate words to describe the depth of sadness and pain in my heart,” Haylee shared. “I prayed that I would wake up from this, that it wasn’t real. But deep down, I knew God was asking us to walk a hard road … and that He would walk it with us.”

Even in uncertainty, they held onto hope; not for a miracle cure, but for a moment. A chance to meet their son, to hold him, to love him in this life.

Supported by their care team, including their obstetrician and Dr. Roque, they prepared for every possibility. When John Levi stopped growing late in the pregnancy, a Caesarean section was scheduled at 37 weeks.

On the day of his birth, the team at Sacred Heart Emerald Coast created a space of compassion and dignity. A private room was arranged, shielding the family from the joyful sounds of other births, a quiet acknowledgment of their unique and sacred journey.

“We are so thankful we chose Sacred Heart,” Haylee said. “The care, thoughtfulness, and professionalism we experienced - it felt like we were being treated as family, not just patients.”

Their church community surrounded them in prayer. On the day John Levi was born, more than forty loved ones gathered in the hospital chapel, lifting the family up and asking for peace, strength, and grace.

Before surgery, their obstetrician offered gentle reassurance and shared that she had prepared a selection of worship music to play during the delivery, a small but deeply meaningful act of care.

When John Levi entered the world, the room held its breath.

“He’s here,” the doctor said.

But there was no immediate cry.

Haylee held her tiny son, just three pounds, four ounces, against her chest. His life seemed to hang by a thread. Through tears, she whispered to him, “God loves you so much. We love you. I’m so sorry. It’s not supposed to be this way - but it’s okay.”

Then, something extraordinary happened.

As David held John Levi and began to sing a worship song, their son responded. He cried. His heart rate strengthened. He began to breathe.

For seven precious hours, they lived a lifetime of love.

Family members came, one by one, to meet and hold him. There were tears, prayers, songs, and quiet moments of awe. Every second was a gift.

And then, gently, peacefully, John Levi slipped away, held by the love of his parents, leaving an imprint on their hearts that will never fade.

Haylee and David will always be grateful:  for the time they were given, for the care that surrounded them at Sacred Heart Emerald Coast, and for a son whose brief life forever changed their own.