MASSILLON, Ohio (AP) — He was beginning to slip away.
The little boy had taken his first breath slightly more than a week earlier, and now he was close to taking his last.
Doctors had said there was nothing they could do.
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The woman who had given him life wanted to hear her child’s final heartbeat. Holding a stethoscope to his chest, she listened.
The baby’s heartbeat slowed. His life was fading. Slower and slower it sounded until it was clear the end was near.
Tracy McCarthy was about to experience what no parent should ever have to.
Baby Jack had other plans.
He wasn’t ready to say goodbye. Not yet.
His heartbeat, almost inaudible, suddenly became stronger and stronger.
“He was clearly fighting to be here and we wanted to fight for him,” McCarthy said of her infant son.
Tracy McCarthy and her husband, Tommy, steadied themselves.
The couple decided in that moment to give Jack a chance. No matter the cost. No matter the odds. No matter the outcome.
Their journey would take the family from dejection and despair after being rejected by several medical facilities, to hope and joy after finding a doctor in Illinois who was willing to help.
Then, they summoned the strength to accept their baby’s frailty.
Jack Thomas McCarthy’s life lasted 81 days — much longer than doctors had guessed. Enough time to smile. Enough time to touch the lives of those around him in a lasting way. And enough time to feel his parents’ boundless love.
Not long after they married in 2017, the McCarthys learned they were expecting.
Like most first-time parents, they were ecstatic, and the pregnancy progressed normally.
At 39 weeks, baby Jack was born on Nov. 8, 2018, weighing in at 8 pounds and 3 ounces; by all appearances a healthy boy with 10 fingers and 10 toes.
Jack seemed to resemble his maternal grandfather and was named after him. His middle name pays homage to his father.
Everything seemed normal until roughly an hour before mom and baby were to be sent home. Staff brought Jack to his mother to nurse.
He wouldn’t latch on, Tracy McCarthy recalled.
Mother’s instinct kicked in. Tracy told her husband something wasn’t right. They told the nurse who checked baby Jack’s oxygen level discovering it was much too low.
Just like that, the happy parents moments from taking their newborn home were left with uncertainty as doctors huddled over Jack, and he was whisked away to the neonatal intensive care unit.
Doctors told the McCarthys that Jack had a heart defect. He was later transferred to Nationwide Children’s Hospital in Columbus.
“It’s been a whirlwind of a roller coaster ride,” 28-year-old Tommy McCarthy said in mid-January. “Everything was snatched away from you. Going from hospital to hospital not knowing if you were leaving with your son. If he was ever going to go home and see the room you made for him or meet his dogs.
“We were told twice he was going to die,” said the new dad. “It’s a tough pill to swallow. It’s not in the parent handbook.”
While in Columbus, doctors ran several tests, including genetic tests.
Jack could be suffering from a number of conditions, including Loeys-Dietz syndrome, doctors told the McCarthys. Jack spent a week in the hospital fighting for his life, as his parents waited for tests to confirm what was wrong.
Doctors left little hope. Jack needed surgery to repair an enlarged aorta, a surgery he likely would not survive. The baby was simply too weak.
With insurmountable options, Tracy and Tommy McCarthy took their baby home to die.
Doctors gave Jack two to 72 hours to live.
“It was awful,” Tracy McCarthy said, her voice trembling and tears flowing.
Back in Massillon, Jack was introduced to the family dogs Buddy, a goldendoodle, and Bear, a labradoodle.
“We were devastated but we knew he had a one-way ticket to heaven,” his mother said. “We told him everything would be OK. We were so happy that we had him for a little bit of time.”
For the next 48 hours they waited.
A hospice nurse was on hand. Four times, baby Jack stopped breathing. His skin turned purple.
Days passed. Jack refused to die.
His parents refused to wait longer, and, taking their cue from Jack, they looked for a way to beat the odds.
With the help of Nationwide hospital, they reached out to Johns Hopkins pediatric geneticist Dr. Harry Dietz, who discovered the disease that was taking Jack’s life.
Dietz referred them to Dr. Luca Vricella, a pediatric cardiac surgeon at Advocate Children’s Hospital outside of Chicago. Vricella had recently left Johns Hopkins.
“He called on a Tuesday and said he heard about our story and that we were turned away from hospitals. He said, ‘I think I can help your son,'” the 32-year-old Tracy McCarthy said.
Two days later, Jack was transported via a medical jet from the Akron-Canton Airport to the hospital in Illinois. Another week passed and he was on a surgical table.
Loeys-Dietz syndrome is a connective tissue disorder similar to Marfan syndrome.
The condition is characterized by aortic aneurysms.
In Jack’s case, his aorta was enlarged, covering his entire heart and compressing nearby organs. His heart was dislodged and blood was unable to reach his lungs.
“He had an aorta root the size of a 20-year-old,” Vricella explained.
Not only was Jack’s aorta enlarged, he also had an aortic dissection.
Vricella replaced Jack’s ascending aorta with one from a 4-year-old child. Almost immediately the baby responded to the surgery, the doctor said.
Survival rates are very high once treated, Vricella said. But Jack’s case was unchartered territory. The little baby from Stark County was the youngest child with Loeys-Dietz syndrome that Vricella had treated. Jack would have to be monitored and his condition required medication.
Typically, children are diagnosed between the ages of 4 to 10, or as an adult. Jack, said Vricella, was lucky to have been diagnosed so young.
The aortic dissection was another matter. He would certainly need more surgeries down the road.
As 2018 was coming to a close, the McCarthys were coming home.
Baby Jack had made great strides since his surgery, his mother said.
He gained weight, a common struggle for patients with cardiac problems.
He was smiling and eager to interact with his parents.
Dr. Stephen Manu, a pediatric cardiologist at Akron Children’s Hospital, took over the baby’s care.
Manu, Tracy McCarthy said, had been a champion for Jack from the beginning. He sought colleagues willing to operate.
“He was going to keep fighting for him,” she said.
A recent scan showed Jack’s new aorta was working properly. Doctors pointed out the enlarged descending aorta and the dissection that Vricella discovered during surgery.
The McCarthys dared to let themselves dream of Jack’s future. They saw him leading a normal life, going to school, playing and having fun. They cried for him, laughed with him, hoped with all their hearts as they kept moving forward.
Dr. Vricella believed anything was possible, “But I told his parents, we take it one day at a time.”
Tommy McCarthy said Jack was like any newborn. Though he used a feeding tube, he cried when he was hungry, needed changed or wanted to be held.
Tracy McCarthy marveled over her “happy, smiley baby with a fun personality.”
Over the weekend, Jack’s paternal grandparents spent time with their grandson.
The following day his maternal grandparents came to visit.
Grandpa Jack was holding his namesake when he realized something was wrong.
Baby Jack “looked up at him and he looked down at (the baby) and he knew he was struggling,” Tracy McCarthy said on Tuesday.
He called out to his daughter, who was in the shower. Jack wasn’t breathing.
Tommy McCarthy began CPR. They called 911. Paramedics arrived and raced the infant to the hospital, all the while continuing life-saving measures.
It was too much. Jack’s heart had stopped beating.
He died Jan. 27.
“There is a lot of faith and learning to deal with the void we feel on earth,” Tracy McCarthy said. “But it’s not a forever goodbye. We will see him in heaven. He’s happy and he’s healed and we will see him again. That is driving us forward and what is going to get us through it.”