Jaxon Britton is not even 2 yet and he’s already developed a reputation for marching to the beat of his own drum.
“He’s a unique kid, what can we say?” his mother, Bridget said.
Jaxon has defied the odds multiple times and lived to smile about it. He’s been through more serious health issues than many grown adults will ever face in a lifetime, and he’s not quite done, yet.
But he lights up every room he enters. He’s surrounded by people who quickly become his supporters moments after they meet him.
Jaxon Britton will turn 2 in November and has already faced a medically complex life, but his smile and determination remain firmly in place.
How is this boy so unique?
“Well, we were told his survival rate in-utero was 1 percent from a rare genetic mutation he has,” Bridget said. “And then we almost lost him the day after he was born.”
Jaxon, of Uhrichsville in Tuscarawas County, was diagnosed with a heart defect at birth, and his parents were dealt a blow that their first child would face heart surgery to repair it. Doctors hoped to hold off surgery for 6-12 months so he could grow as big and strong as possible first.
Then on day 2 he developed pulmonary hypertension – a restriction of oxygen and blood flow in the lungs – totally separate from his heart issue.
“I was still at my hospital recovering from a C-section when he started rapidly declining,” Bridget said.
Jaxon was born with a heart defect that would require surgery at 3 months of age. He also required an ECMO procedure at 2 days old to help his lungs to function.
A major scare at 2 days old
Doctors determined he needed an ECMO procedure. This involves connecting the patient to a machine that performs the work the heart and lungs normally do because his weren’t strong enough.
Bridget was released from her hospital to be with Jaxon.
“I faced my chair to the door, and I remember staring at it for hours waiting and waiting for the doctor to come out and tell us how it went,” she said.
Five hours later the doctor emerged hopeful, but said he had to perform CPR multiple times throughout the procedure.
“Everything that happened that night will be sharp in my mind forever,” Bridget said. “It was just overwhelming for me to hear.”
Heart surgery time moved up
Jaxon made it through that event and stayed in the NICU for 62 days before being sent home. But it was a relatively short visit because his cardiologist determined the heart surgery needed to be moved up to 3.5 months. It couldn’t wait because of everything else that had happened.
Bridget and husband Josh enjoyed a month-and-a-half break from being in the hospital with Jaxon and used that time to get him bigger and stronger for his surgery.
On March 5 of 2019 Jaxon had the surgery and it went well, according to his doctors, Robert Stewart and Michael Spector.
Today Jaxon has many of his medical needs met at the nearby New Philadelphia Health Center, including PT, OT, speech therapy and his pediatrician. Being treated close to home gives him more time to spend out hiking with dad, Josh.
Services close to home
The Brittons, who live an hour south of Akron, diligently made it to all of Jaxon’s follow-up appointments despite the drive involved. They caught a welcomed break when the New Philadelphia Health Center opened earlier this year just a few miles from their home.
Not only is his pediatrician, Dr. Jennifer Gigax, there, but he can also do his physical, occupational and speech therapies there.
“While Jaxon’s journey has indeed been challenging, he has absolutely amazed me and surpassed even my most hopeful expectations,” Dr. Gigax said. “His smile and personality are golden. I can’t hold back my praise for how well he is doing. It has been a gift to watch a sweet child and beautiful family persevere and find joy and success amidst daunting obstacles.”
Jaxon still goes to Akron often to see specialists for his heart, gastro-intestinal issues, neurological and genetic concerns, and his vision. He’s had two eye surgeries to correct issues caused by lack of oxygen at birth.
He currently doesn’t eat food by mouth, so the family works with nutrition and GI in Akron to support weaning him off tube feeding.
His parents say he has some of the best doctors and therapists, and with all the early and ongoing interventions they are hopeful for a bright future.
“He might not be the most coordinated person right away, but that’s OK,” she said.
Jaxon’s heart condition will be with him the rest of his life, she said. Learning to eat by mouth is a slow process, but coming along each day. In terms of his neurological development, the doctor is very pleased with his progress and believes he will continue to improve.
