Haylee and David Huffman have deep roots on the Emerald Coast. They met in Destin, Haylee’s home town, and were married in Santa Rosa Beach eleven years ago. There, deeply committed to serving God, they “planted” a church that David currently pastors. Their three children were born at Ascension Sacred Heart Hospital on the Emerald Coast: Asher (6), Hattie (3), and John Levi. This is John Levi’s ‘story from the heart.’
When Haylee found out that she was pregnant on their ninth anniversary, they were filled with joy. An ultrasound at the twenty-week mark showed all was well. With her first two pregnancies, they had declined the routine blood screening for abnormalities; but this time, “for some reason”, they opted to have it.
The phone call from a nurse with the screening results was devastating: There was a high risk that the baby would be born with Trisomy 18, Edwards Syndrome, a devastating chromosomal abnormality. But more testing was needed to confirm this.
David was at his church when Haylee contacted him with this news, saying she was on her way there. It was difficult to understand her, she was crying so hard, but he could make out the words Trisomy 18. He googled information about the condition, but as he read, he really saw only one word: “fatal.”
Together, they drove to the bay. David recalls, “It was a beautiful day, so we just watched the water, prayed, researched on our phones, cried, prayed some more. Scripture after scripture flooded my mind, mostly Psalms. ‘I cried out to God for help…When I was in distress I sought the Lord.’ “
The next step was a consultation with Dr. Roque, a high-risk perinatal specialist. But before that appointment, they had to meet with a genetic counselor, who explained that the blood screen results indicated a 1/10 likelihood that the baby suffered from Trisomy.
As they watched the screen of Haylee’s in-depth ultrasound, they saw glaring discrepancies in the fetus indicative of its condition. They looked at each other and cried. Dr. Roque confirmed that the ultrasound was consistent with the blood screening; it had not been a false positive as they had hoped. An amniocentesis revealed that she was carrying a boy.
As time passed, Haylee and David struggled to understand their burden. She found it a grace to know what was to come but had to learn to live with waves of grief, saying “There are no adequate words to describe the depth of sadness and pain in my heart. I prayed the Lord would take this, that I would wake as from a dream, but somehow knew deep down that God would have us walk the hard road and that He would walk it with us.”
In the months that followed, they sought to learn as much as possible about Trisomy 18, and their options for the infant’s birth. They were deeply grateful for the medical care of their obstetrician Dr. Esses, and that of Dr. Roque. They became aware that while it was quite possible that Haylee would lose the baby late-term, their hope was to meet John Levi in this world and hold him in their arms.
When Dr. Roque informed them, the fetus has stopped growing, a Caesarian was scheduled at 37 weeks. When that day arrived, the staff at Ascension Sacred Heart on the Emerald Coast was well- prepared and compassionate, responding to their needs in every way. A large antepartum room was designated for privacy away from other births, so they would be spared the sounds of families celebrating their newborns.
Haylee shares, “We are so thankful we chose to have John Levi at Ascension Sacred Heart Emerald Coast, so thankful for the care, thoughtfulness and medical professionalism we experienced. The staff treated us more like family than patients.”
Early on, David had shared the news of the baby with his congregation at Redeemer 30a, and they had responded with loving support. On the day of John Levi’s birth, over forty people packed the chapel at the hospital to pray for the best possible outcome.
Haylee and David were comforted by the “loving words and gentle presence” of Dr. Esses before the surgery began. She told them she had prepared a special selection of worship music, which played during the procedure. When John Levi arrived, the doctor said, “He’s here!” But there was only silence. As Haylee held the frail, three-pound four-ounce baby on her chest, it appeared he would be gone any second.
She was crying, praying, kissing him, and speaking words of reassurance 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, as David held the baby and sang a worship song, John Levi rallied. He started to cry, his heart rate rose, and he began breathing on his own. Later, in the recovery room, the whole family got to see and hold him.
Haylee and David are forever grateful they were graced with an amazing seven hours with their son that day, before he quietly “slipped away to be with Jesus.”
This is an excerpt from Stories from the Heart. Click to read more.
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