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St. Augustine family thankful for infant's life-saving treatment at Wolfson Children's Hospital

The St. Augustine Record - 10/17/2017

Mandy May knew immediately this birth was like none of her previous three.

"I was like, why is he not crying? I don't hear him at all," said May.

The 33-year-old mother had just delivered a baby boy at 37 weeks in a planned C-section at Jacksonville's St. Vincent's Medical Center on April 10. But as she lay on the operating table expecting to have her infant placed in her arms, May became aware there was something seriously wrong.

Time seemed to stand still and speed up all at once as Mandy's husband, Jimmy, watched the medical team whisk their son away.

"They took him to a side room and called me in and told me that they needed to take him to their neonatal intensive care unit (NICU)," Jimmy recalled. "I asked, 'Can my wife give him a kiss first?' "

So she did, Mandy embraced the 6-pound, 10-ounce baby they named Charles Arthur May before the newborn was heavily sedated and placed on a ventilator.

"It was the worst feeling, going back to your room without your baby," said Mandy, shaking her head at the memory.

The Mays - who live in the World Golf Village area of St. Augustine and have three other young children - were told their son was diagnosed with persistent pulmonary hypertension, a serious disorder in which the arteries to the lungs remain constricted after delivery, limiting the amount of blood flow to the lungs and oxygen into the bloodstream.

The couple couldn't hold, or even touch, their baby. They could only glimpse him through the glass panes of the sterilized confines of the NICU, where he was hooked up to a mess of wires. Their son was considered "critically stable."

Within hours, the Mays were advised that doctors thought Charles should be transferred to the high-level NICU at Wolfson Children's Hospital, also in Jacksonville.

Mandy, still recovering from her cesarean section, wouldn't be deterred from accompanying him.

"We're throwing suitcases around," she said. "Jimmy's like, we're leaving, we're checking out."

At Wolfson, the infant was placed on extracorporeal membrane oxygenation, also known as ECMO. Through the advanced technology, blood from the newborn is circulated through a machine that removes carbon dioxide and then returns the blood to the baby's body, warmed and oxygenated. A pump also takes over some of the work of the heart.

"It's life support, basically," said Mandy.

Wolfson has delivered ECMO for a decade now and this year was named a gold level "center of excellence" by the Extracorporeal Life Support Organization.

To look at baby Charles, now 6 months old, you'd have no idea of the trauma he went through in the first three weeks of life. In a recent visit to the May home, he could be seen bobbing up and down in a bouncer, sometimes pushing his 3-year-old brother away when he hovered too closely. The only reminder his parents have of how close their son came to death is a still-visible scar near his neck where tubes for the ECMO machine were surgically inserted.

As the Mays sat at their son's side for the 20 days he received the life-saving treatment, they weren't always sure that would be the case.

Since then, Mandy has done research about ECMO on infants and learned that not all babies who undergo the critical procedure make it - not all are as lucky as Charlie.

According to a 2016 University of Michigan Medical School study, death rates for newborn ECMO patients ranged from 18 to 50 percent.

"I just had to have faith that he was going to get better," his father said.

For nearly three weeks, Jimmy and Mandy May tried to remain focused on Charles getting through each day, and then another one. While Mandy's mother and sister took care of the couple's three children, the Mays were provided housing by the Ronald McDonald House near Wolfson before they were finally allowed overnight stays in the same room with the baby.

There have been bumps in the road, too. Given fentanyl so he would tolerate the treatment, Charlie went through a period of withdrawal and was prone to fits of shaking and fussiness. He had a blood clot, which eventually dissolved.

Calling it a "harrowing experience," Jimmy May and his wife said they are so thankful for the level of care and support they received, particularly from their team of nurses, whom they reunited with Saturday at Wolfson.

When they were finally able to meet their little brother, Charles' siblings - ages 9, 6 and 3 - welcomed him with open arms.

"He's a very happy baby," his mother said. "He loves to watch the other kids play."

The family has settled into regular routines, with Jimmy holding down two jobs so Mandy can home-school the children. The baby is progressing toward height and weight checkpoints, and receives occupational and physical therapy each week. He'll go to a developmental specialist soon, "just to make sure," his father said.

His parents share that they named Charles Arthur - their fourth and final child - after Mandy's father and grandfather.

"But I just call him Little Charlie," said Jimmy. "I call him Miracle, too."