Jaxon Buell was born without a skull and part of his brain in Florida and just celebrated his first birthday. The doctors told the parents that he won’t make it for long given that he was born with a rare brain malfunction called Microhydranencephaly, but the little fighter has been marking first-year milestones such as teething and learning to talk.
Microhydranencephaly is 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, the thin tissue that covers the brain, should be. Microhydranencephaly has no known cure because the basic structures of the largest part of the brain just aren’t there.
When Jaxon was born, news of the child’s miraculous survival was read by hundreds of thousands after his first birthday in August, though some said that Brandon and his wife Brittany were ‘selfish’ or should have aborted the child to avoid the pain he will suffer. However, the father of the infant responded to the criticism in a heartfelt Facebook post on Saturday night, mentioning his wife and his decision to keep their son was ‘our choice, and only our choice’ and that the wife didn’t want to ‘play God’.
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.
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The Buells were then referred to a clinic for high-risk pregnancies, they 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.
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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. 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.
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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.At Boston Children’s the Buells got a more specific diagnosis. Jaxon was born with microhydranencephaly. The more precise diagnosis helped the Boston doctors recommend new medicines that help Jaxon sleep through the night and make him more comfortable.
The Buells continue to post pictures and videos of their little boy – nicknamed Jaxon Strong – defying all odds.
