Doctors warned baby wouldn’t live without a skull, dad says. But Owen just turned one

Owen Masterson, of Missouri, celebrated his first birthday in September after he was diagnosed with Acalvaria, a rare and fatal condition.
Owen Masterson, of Missouri, celebrated his first birthday in September after he was diagnosed with Acalvaria, a rare and fatal condition. Facebook/On Angels' Wings

Before Owen Masterson was born, doctors told his parents that their baby boy had no chance to survive outside of his mother’s womb. That diagnosis came on May 24, 2017, according to his dad’s Facebook post.

Tom and Jessie Masterson, of Missouri, were told their baby’s body was perfect “from his neck down,” and his brain was developing, but parts of his skull were not, the post says.

“The number of tears we cried showed a slight representation of our heartbreak and grief,” Tom Masterson wrote in the public Facebook post. “The doctors here in Springfield have no answer and no diagnosis.”

The next month, the Mastersons learned that their baby had Acalvaria. The condition is “an extremely rare malformation characterized by the absence of the flat skull bones of the brain, dura mater, and scalp muscles,” according to the Genetic and Rare Diseases Information Center.

Babies with Acalvaria have a layer of skin covering their brain, the center says, but it’s “most often lethal at birth” and “a few surviving infants have been reported” as of the 2013 article.

Doctors told the Mastersons that “abortion was an option due to the certainly fatal condition,” Tom Masterson wrote. But for his family, it “was not an option for us and they respected that and did not push.”

Instead, his family asked for prayers and support.

Owen was born alive at 4:27 p.m. on Sept. 13, 2017, according to a Facebook post.

“He was crying. We were very, very excited to hear that,” Jessica Masterson told the Springfield News-Leader. “(Tom was) like, ‘Oh my gosh, he is alive and he’s crying.’ ... They just gave him to me and we just held him.”

Owen was born with no skull above his ears or eyebrow, which leaves his brain unprotected, the Springfield News-Leader reported.

“He is still going strong right now and we are praising God for giving us time on Earth with Owen,” Tom Masterson wrote on Sept. 14, 2017. “He does have some significant health concerns, but we are just focused on enjoying each moment with him.”

Now, the Masterson family has had over a year of moments with Owen, their second child.

Owen celebrated his first birthday last month, which his doctors would have never expected.

“Doctors said he wouldn’t live a day, but here sweet Owen is — the brave little warrior — now a year old!” On Angels’ Wings posted to Facebook. “He’s a miracle and defying all the odds.”

On Angels’ Wings is a Springfield-based nonprofit that takes free photographs of children with terminal diagnoses, according to its Facebook page.

About a year after his birth, Owen can’t move around, and he does not like wearing helmets or brain protection, reports the News-Leader. Doctors believe he can see things if they’re up close, the newspaper reported, and he smiles and laughs.

“We don’t view this as some tragic accident that is just awful,” Tom Masterson told the News-Leader. “For whatever reason, this is what we get to walk through and experience. This is a season of life that we are going to get to be experiencing right now. Life is just full of that.”

It's been a little over a year since J.J. Nelson was able to leave Cook Children's NICU after being born 3 months premature. He spent his 2014 Christmas in the hospital surrounded by family and friends, but this year he gets to spend it at home. (