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MASSILLON, Ohio (AP) – He was starting to escape.
The little boy had taken his first breath a little over a week ago and he was about to take the last one.
The doctors had said that they could not do anything.
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The woman who gave her life wanted to hear the last heartbeat of her child. Holding a stethoscope on her chest, she listened.
The baby's heartbeat slows down. His life was blurred. More and more slowly, it sounded until it was clear that the end was near.
Tracy McCarthy was about to experience what no parent should ever have to do.
Baby Jack had other projects.
He was not ready to say goodbye. Not yet.
His heartbeat, almost inaudible, suddenly became louder and louder.
"He was clearly fighting for being here and we wanted to fight for him," McCarthy said of his young son.
Tracy McCarthy and her husband, Tommy, have stabilized.
The couple decided at that time to give Jack a chance. It does not matter the cost. It does not matter the chances. It does not matter the result.
Their trip would take away the despondent and desperate family after being rejected by several medical centers, in hope and joy after finding a doctor in Illinois who was willing to help.
Then they had the strength to accept the fragility of their baby.
Jack Thomas McCarthy's life lasted 81 days, much longer than the doctors had guessed. Enough time to smile. Enough time to touch the lives of those who surround it in a sustainable way. And enough time to feel the boundless love of his parents.
Shortly after their wedding in 2017, the McCarthys learned that they were waiting.
Like most parents for the first time, they were ecstatic and the pregnancy was normal.
At 39 weeks old, baby Jack was born on November 8, 2018, weighing 8 pounds and 3 ounces; Obviously, a healthy boy with 10 fingers and 10 toes.
Jack seemed to look like his maternal grandfather and was named after him. His middle name pays homage to his father.
Everything seemed normal until about an hour before mom and baby were sent home. The staff brought Jack to his mother's home to nurse.
Tracy McCarthy remembered that he did not want to hang on.
The mother instinct set in place. Tracy told her husband that something was wrong. They told the nurse who had checked the baby 's oxygen level by finding out that he was way too low.
Just like that, the happy moments of the parents who had just brought their newborn home were uncertain when the doctors huddled around Jack, who was taking him to the neonatal intensive care unit.
The doctors told the McCarthys that Jack had a heart defect. He was later transferred to the Columbus National Children's Hospital.
"It has been a whirlwind of roller coasters," said Tommy McCarthy, 28, in mid-January. "Everything was torn from you." Going from hospital to hospital not knowing if you were leaving with your son, he would go home one day and see the room you made for him or meet his family. dogs.
"We were told twice that he was going to die," said the new father. "It's a hard pill to swallow.This is not in the parents manual."
In Columbus, doctors performed several tests, including genetic tests.
Jack could suffer from a number of conditions, including Loeys-Dietz syndrome, doctors said to the McCarthys. Jack spent a week at the hospital fighting for his life, while his parents were waiting for tests to confirm what was wrong.
The doctors left little hope. Jack had to undergo surgery to repair an enlarged aorta, an operation in which he probably would not survive. The baby was just too weak.
With insurmountable options, Tracy and Tommy McCarthy took their baby home to die.
The doctors gave Jack two to 72 hours to live.
"It was awful," says Tracy McCarthy, her voice trembling and tears flowing.
Back in Massillon, Jack met the dogs of the Buddy family, a goldendoodle, and Bear, a labradoodle.
"We were devastated but we knew that he had a one-way trip to paradise," his mother said. "We told him that everything would be fine, we were so happy to have had a little time."
They waited for 48 hours.
A hospice nurse was at hand. Four times, baby Jack stopped breathing. His skin has become purple.
Days passed. Jack refused to die.
His parents refused to wait any longer and, like Jack, they looked for a way to beat the odds.
With the help of the Nationwide Hospital, they contacted Dr. Harry Dietz, pediatric geneticist of Johns Hopkins, who discovered the illness that had cost Jack his life.
Dietz referred them to Dr. Luca Vricella, a pediatric cardiac surgeon at Advocate Children's Hospital, near Chicago. Vricella had recently left Johns Hopkins.
"He called a Tuesday and said that he had heard about our story and that we had been denied it, and we refused him," said Tracy McCarthy, 32.
Two days later, Jack was transported by a medical jet from Akron-Canton Airport to the Illinois Hospital. Another week passed and he was on a surgical table.
Loeys-Dietz syndrome is a connective tissue disorder similar to Marfan syndrome.
The disease is characterized by aortic aneurysms.
In Jack's case, his aorta was enlarged, covering all his heart and compressing the neighboring organs. His heart was dislodged and the blood unable to reach his lungs.
"He had an aorta root the size of a 20-year-old man," explained Vricella.
Jack's aorta was not only enlarged, he also underwent an aortic dissection.
Vricella replaced Jack's ascending aorta with that of a 4-year-old. Almost immediately, the baby responded to the operation, said the doctor.
Survival rates are very high once treated, said Vricella. But Jack's case was an unknown territory. The little Stark County baby was the youngest child Vricella had treated with Loeys-Dietz syndrome. Jack should be monitored and his condition required drug treatment.
In general, children are diagnosed between 4 and 10 years, or in adulthood. Jack, said Vricella, was lucky to have been diagnosed so young.
Aortic dissection was another matter. He would definitely need more surgeries later.
By the end of 2018, the McCarthys were returning home.
Baby Jack had made great progress since his surgery, said his mother.
He has gained weight, a common struggle for patients with heart problems.
He was smiling and eager to interact with his parents.
Dr. Stephen Manu, pediatric cardiologist at Akron Children's Hospital, took charge of the baby's care.
Manu, said Tracy McCarthy, was a champion for Jack since the beginning. He looked for colleagues willing to operate.
"He would continue to fight for him," she said.
A recent analysis showed that Jack's new aorta was working properly. The doctors pointed to the enlarged descending aorta and dissection discovered by Vricella during a surgical procedure.
The McCarthys dared to dream of Jack's future. They saw him lead a normal life, go to school, play and have fun. They were crying for him, making fun of him, hoping with all their heart that they would keep on going.
Dr. Vricella thought that everything was possible. "But I told his parents, we take it one day at a time."
Tommy McCarthy said that Jack was like a newborn baby. Although he used a feeding tube, he cried when he was hungry, needed to be changed or wanted to be restrained.
Tracy McCarthy is amazed at her "smiling and smiling baby with a fun personality".
Over the weekend, Jack's paternal grandparents spent time with their grandson.
The next day, her maternal grandparents came to visit.
Grandpa Jack was holding his namesake when he realized that something was wrong.
Baby Jack "looked up at him and looked down at (the baby) and he knew he was struggling," said Tracy McCarthy on Tuesday.
He called his daughter who was in the shower. Jack did not breathe.
Tommy McCarthy started CPR. They called 911. Paramedics arrived and took the child to the hospital, while continuing to take steps to save lives.
It was too much. Jack's heart stopped beating.
He died on January 27th.
"We have a lot of faith and we are learning to deal with the emptiness we feel on Earth," said Tracy McCarthy. "But it's not a goodbye forever, we'll see him in paradise, he's happy, and he's healed and we'll see him again, that moves us forward and helps us through."
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