Jaxon “Strong,” the baby born with a rare birth defect that causes a malformation in which significant parts of the skull and brain are missing, celebrated his first birthday in August.
Before Jaxon Emmett Buell was born, doctors told his parents, Brittany, 27, and Brandon Buell, 30, from Tavares, Florida, that he suffered a condition called microhydranencephaly and that he would not survive pregnancy.
After Jaxon was born with parts of his brain and skull missing, doctors said he would die soon after birth, according to the Daily Mail.
But despite dire medical prognosis, Jaxon survived and celebrated his first birthday in August.
Microhydranencephaly is a rare condition occurring only in one out of every 4,859 babies in the U.S, according to the Centers for Disease Control and Prevention. Grown individuals with the condition are even rarer because most babies who have the condition die before or shortly after birth.
Doctors had advised the young parents to terminate the pregnancy, but being devout Christians who oppose abortion, they refused.
“Who are we to decide? We were given a child, we are given a chance and we have to be his voice.”
Brandon recalled the moment during Brittany’s pregnancy when the second ultrasound examination was being conducted and the look in the eyes of the technician betrayed the fact that something was wrong.
“After our second ultrasound at 17 weeks, when we found out he was a boy, we knew something was up when the ultrasound technician went towards his head and went very quiet,” Brandon said.
Brittany soon got a call from doctors confirming concerns about the scan results. Both parents were in shock, and Brandon was so distraught that his boss had to send him home for the rest of the day.
“I was devastated,” Brittany said. “It was heart breaking because something I always wanted my whole life was happening, but then I was told there was a possibility it might be a stillborn. It took all the joy away from me. The happiness that normal women have when they are pregnant — I had none of that.”
At first, medical specialists were unable to decide what was wrong with the baby. They considered a host of different possible conditions until tests finally confirmed that the child had the condition called microhydranencephaly. They advised the couple to terminate the pregnancy at 23 weeks, but their strong Christian convictions prevented them from taking the step that most other parents might have considered.
The baby was finally born by caesarian section on August 27, 2014, weighing four pounds. He spent the first three weeks after birth at the Winnie Palmer Hospital’s neonatal intensive care unit, closely watched by specialists.
Doctors said the baby would never walk and talk and that natural functions, such sight and ability to hear, would be missing. But the formal diagnosis allowed doctors to prescribe a new medicine which helped to improve Jaxon’s condition.
Despite the fact that they know that Jaxon may not live much longer, Brittany and Brandon remain positive, saying on his first birthday that their child was “thriving.”
“I try to stay positive 99 per cent of the time,” she added, “but there is that 1 per cent because I know the reality of the situation — that we’re probably going to outlive him.”
“It is always in the back of my mind. I’m very aware that today maybe his last day. I’m aware tomorrow he may not be here.”
After Jaxon was born, media coverage of the inspirational story of his life, his health struggles, his parents’ experience and faith, turned the infant into a social media celebrity. Jaxon has tens of thousands of social media fans who have shared his life story on Facebook.
Fans nicknamed him “Strong,” and sympathizers set up a GoFundMe page that raised about $55,000 to help his parents pay for his medical care.
[Images: Facebook / Jaxon Strong]