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Brandon and Brittany Buell talk about their journey raising child with microcephaly

Posted at 3:46 PM, Sep 20, 2016
and last updated 2016-09-21 09:38:59-04

As Zika cases continue to increase in South Florida, fears of babies born with microcephaly are growing. There are more than 80 pregnant women in Florida who have Zika, the mosquito-borne virus that can cause microcephaly in babies.

Two years ago, a Central Florida couple gave birth to a baby with an abnormally small head. Not a lot was known about microcephaly.

At two-years-old, Jaxon Buell weighs just over 13 pounds and is 25 inches long. He's living with only 20 percent of the brain. Doctors say it's a miracle he is still alive. 

"He is smiling, he's laughing, he does work on some words we hear him say momma and daddy which is more like a-a or ady," said Brandon Buell, Jaxon's father. 
 
Jaxon has microhydroencephaly, a developmental abnormality in the brain that can case severe microcephaly. 
 
"Today you're thinking Zika, you think they are always related and that's not the case," said Brandon.
 
Doctors are not sure what caused Jaxon's condition. Some say genetics, others believe a lack of oxygen to the brain. 
 
"We found out there was an issue 17 weeks into the pregnancy and the technician noticed that his head was behind in growth significantly," added Brandon. "They told us originally it was spina bifida, and then that turned into possibly Dandy-Walker syndrome....When you start off and you get a diagnosis like that, you're hopeless, you're clueless and you're petrified." 
 
Despite their fear, Jaxon's parents never considered terminating the pregnancy. 
 
"He wasn't in any danger, I wasn't in any danger and every time we went in for an ultrasound his heart was beating and he was moving around and you could see his little arms and legs," said Brittany Buell, Jaxon's mother.
 
After Jaxon was born, doctors told Brandon and Brittany their little boy wouldn't make it. 
 
"The doctor came in and he showed us a normal child's MRI of  their brain and then he showed us Jaxon's and they're obviously quite different," added Brandon. 
 
Where there should be brain tissue, there is fluid. 
 
"He [doctor] went on to tell us that Jaxon will probably never hear, never see, probably never walk and probably never talk and we were so raw with emotion," said Brandon. "He's so small and he has all the tubes and all the monitors are beeping and blinking and we're in that room just sobbing as husband and wife as mother and father just sobbing over our son that we believe we're going to lose any second any day. A crash happened in that room and Jaxon jumped in my arms."
 
And that crashed proved to be the turning point for Brandon and Brittany. Jaxon reacted to the loud sound. Mom and dad suddenly had hope. 
 
"He is so strong in the inside and outside and he has never stopped fighting," said Brandon.
 
At his own pace, Jaxon is growing. He reacts to noise in the room, he's gaining mobility. He struggles every day with seizures, but he's on medication and does therapy.
 
"No doctor can look at us and say okay now in year 3 we expect this and 4 or 5 and year 10 because he's already surpassed the original prognosis. So, every single day now is just a blessing. Every single day we wake up we try to celebrate that day with him," said Brandon. 
 
"I just feel like God obviously saw something in me that I never knew I had," said Brittany. "To bless me to be able to take care of his child and Jaxon is here for a reason to show the world something."

 

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