Florida 'Miracle Baby' Born Without Most of His Brain Beating the Odds
— -- For Brandon and Brittany Buell, the first serious curveball of parenthood came the day after their 17-week ultrasound.
It was the scan where the couple found out they were having a baby boy, and the day they learned something could be seriously wrong with his health.
“The ultrasound tech was acting strange,” said Brittany Buell, 27. “She got really quiet and when she got to his head and was measuring it. She didn’t say a word.”
The next morning, Brittany said she got a call from the doctor, who told her that her son had spina bifida -- a diagnosis that would later turn out to be incorrect. The actual diagnosis turned out to be much more severe.
The ultrasound indicated that the baby’s brain was not forming properly. In fact, it was almost non-existent.
The Buells, who are from Orlando, Florida, said they began seeing specialty doctors, and at about 23 weeks into her pregnancy, who gently brought up the word “termination.”
“We had the option to terminate in the state of Florida until 24 weeks because of medical reasons,” Brittany said.
The Buells asked the doctors if the baby was suffering, was he in any sort of pain. The doctors said no.
So the Buells decided to take it one step at a time and went through with the pregnancy.
“If they were to tell me he was going suffer, or he would be in pain, or my life was in jeopardy then my thought process might have been different,” Brittany said. “But at the time they said we wouldn’t have to worry about any of that so we didn’t.”
“We’re Christian,” added Brandon Buell, 30. “And we believe in what we believe in, but we still are going to do the best thing for our family, for Brittany, and ultimately for Jaxon.”
When Jaxon was born, the Buells said doctors in the delivery room were not at all confident he would survive the week.
Today, Jaxon is considered a miracle baby. At 13 months old, he is severely disabled, but thriving.
“To us, this just seems normal. We don’t have another child, it’s just him,” Brandon said. “To everyone else this might not look normal but it’s normal for our family on a daily basis.”
Doctors struggled to diagnose his condition. Finally, one year after he was born, neurologists at Boston Children’s Hospital, a Harvard teaching hospital, came up with a proper diagnosis: Microhydranencephaly
“Micro means small head, and hydran and cephaly, which we used for Jaxon, means that brain tissue is replaced with fluid,” said Dr. Heather Olson, a neurologist who evaluated Jaxon in August at Boston Children’s.
Olson explained that “most of his brain” never formed. He has a functioning brain stem which allows him to breathe on his own and his organs to function, but Olson said she doesn’t believe Jaxon will be able to talk or walk independently.
There is no prognosis. Doctors are surprised he has made it this far and any future development “depends on the medical complications,” Olson said.
Jaxon gets nutrition through a feeding tube. “Burping” him involves removing the excess fluid directly from his stomach. Even just bathing him requires both parents.
“We bath him once a day if he allows us to,” Brittany said. “We don’t always get the chance to bath him once a day, but it takes two people. So if only one of us are home, we can’t give him a bath. Because he hates it and he screams and it’s not an enjoyable experience for the most part.”
Sometimes he suffers from mild seizures.
