When Jaxon Buell was born, his doctors didn’t expect him to live days, let alone make it to his first birthday. But the little fighter who was born missing a large part of his brain and skull clearly had other ideas, marking such first-year milestones as teething and learning to talk along the way to his one-year celebration.
“Every doctor we’ve talked to is fascinated that Jaxon is here today, and they can no longer predict a prognosis,” Jaxon’s father Brandon Buell wrote in his Sept. 26 Facebook entry. “We know the reality behind this better than anyone else, what Jaxon is up against and that his life is already miraculous at this point.”
What started out as a seemingly normal pregnancy turned devastating during Brittany Buell’s second routine ultrasound. “I knew something was up because the ultrasound tech was quiet and then she left the room,” Jaxon’s mom told Boston.com. Initially, she said, the doctors suspected spina bifida.
Referred to a clinic for high-risk pregnancies, the Buells were given various diagnoses to explain what might be wrong with the baby. They were told their baby might not survive and if he did, he would be profoundly impaired.
The Buells were given the option of terminating the pregnancy. However, once the doctors assured them that their baby was not in pain and that carrying him full term would not harm Brittany’s health, they decided to go through with the pregnancy, even if Jaxon would only live a few days.
“Jaxon was our baby, and we only had one shot to do everything we could for him. We would never choose to play God in that situation, when we had been given a child, and it was our job to give him a chance to live,” Brandon wrote in his Facebook page.
Delivered by C-section Aug. 27, 2014, Jaxon Emmett Buell arrived weighing 4 pounds and missing most of his brain and skull. The diagnosis: a rare neural tube defect called anencephaly that affects 1 in 4,859 babies each year.
“It was very emotional,” Brandon told Redbook Magazine. “I remember holding him on day two and listening to the doctors say my son would probably never walk, never talk, never know when he’s hungry, or never hear or see. They really did not expect him to make it.”
After three weeks in the NICU on a feeding tube, Jaxon left the hospital. “They sent us home with hospice,” Brittany told Boston.com. “[The doctors] assumed he would peacefully pass away. But I canceled hospice within a week.”
However, Jaxon’s first months were not all smooth sailing. He was hospitalized many times for feeding tube issues and two bouts with a virus. By early this summer he appeared to be increasingly uncomfortable and was no longer sleeping through the night. He also began to have episodes that resembled seizures.
After doctors in Orlando had exhausted all options for treating Jaxon, the Buells flew to Boston and sought a second opinion from Boston Children’s Hospital, one of the nation’s top facilities for pediatric neurology.
“Our plan was to go to the emergency room because they can’t turn you away,” Brittany told Boston.com. “We walked in and said ‘We’re from Florida.’”
At Boston Children’s the Buells got a more specific diagnosis. Jaxon was born with microhydranencephaly, a rare neurodevelopmental disorder. Jaxon has a brainstem, which is critical for motor control, though his is thinner than it should be. Jaxon’s cerebellum – the part of the brain that controls balance and coordination – did not form properly. In addition, scans showed almost nothing where his cerebral cortex should be.
The more precise diagnosis helped the Boston doctors recommend new medicines that help Jaxon sleep through the night and make him more comfortable.“It’s really helpful to finally have a diagnosis that makes sense,” Brendon told Boston.com. “We came to Boston hoping to find a way to add something to the quality and comfort of his life. He’s back to smiling at us, always so happy in the morning after he wakes up and takes turns looking at his mommy’s and daddy’s face.”
Microhydranencephaly has no known cure because the basic structures of the largest part of the brain just aren’t there. But the Buells continue to post pictures and videos of their little boy – nicknamed Jaxon Strong – defying the odds by learning to call his parents “mama” and “addy,” and sit up and reach for things in the hope that Jaxon’s story will advance medical research and help other families.
“No matter who you are or what you believe in, it’s clear that Jaxon’s tiny footprints will have a lasting impression on this world, and that he has already touched and inspired more lives in one year than most of us ever will in our lifetime,” Brandon wrote.