Owen has acalvaria, an extremely rare malformation consisting of the absence of skull and facial bones.

SPRINGFIELD, Mo. — Correction: The original version of this story had incorrect information about when On Angels Wing photographer Michelle Renfro began chronicling the family’s journey. Renfro first took photos of the Mastersons after Owen was born.

Sometimes the doctors are wrong.

Like when they Tom and Jessica Masterson — then 24 weeks pregnant — were told that their baby probably wouldn't survive the pregnancy.

If their child does make it to term, the doctors warned, he would most certainly not survive the trauma of birth.

And if somehow the child somehow survives birth, the Mastersons wouldn't have much time with him.

"He won't be compatible with life," Tom Masterson recalled a doctor's words. "He will not survive this."

Tom smiled at baby Owen, now a year old, as he told the story.

Tom Masterson holds his one-year-old son Owen at their home on Thursday, October 11, 2018. Owen was born missing the top part of his skull and was not expected to survive childbirth. (Photo: Nathan Papes/News-Leader)

Owen has acalvaria, an extremely rare malformation consisting of the absence of skull and facial bones.

Owen has no skull above his eyebrow and ears to protect his brain. When the condition was discovered during an ultrasound at 24 weeks, the doctors were not sure if Owen even had skin covering his brain.

"Our pastor had come to the hospital before he was born and was able to pray with us," Tom continued. "We felt confident that God was going to do something, that Owen had a very specific purpose. We didn't know what that was. But we felt there was a very specific purpose for him."

Owen's purpose, according to his parents, is simply this: sharing his story of hope and the power of faith with others.

"It's definitely challenging, but I wouldn't change him," Jessica said, cradling Owen in her arms as she must do for the better part of the day. "I love him the way he is."

Her husband agreed.

"We are so thankful for him," Tom said. "I'm so happy that we get to experience this. And we don't know what this looks like long term. The doctors are like, 'We are done telling you. We don't know. We haven't been right yet, so we are going to stop talking about it.'"

Owen's doctor told the family he's found about 10 cases where a child has survived more than a few hours with acalvaria. Owen celebrated his 1-year birthday earlier this month.

'We've been chosen to have him'

Tom and Jessica Masterson, both from the Jefferson City area, found jobs in the Springfield area not long after graduating from Missouri State University.

Tom landed a teaching job with Springfield Public Schools and later was hired as an assistant principal. He is currently the principal at Jeffries Elementary.

Jessica was hired as a speech therapist at the Early Childhood Center, but chose to leave that position to take care of Owen.

About three years ago, they took in a 2-year-old named Ryleigh. They have since adopted her.

The couple had a miscarriage not long before becoming pregnant again in 2016.

With Owen, the Mastersons said they were thrilled when they got to the 20-week point and have an ultrasound to learn the baby's gender.

They were told it was a boy, but the technician was unable to view the baby's head.

"They just said, 'We didn't get to see everything so we will see you again.' And we were like, 'All right.' We had no idea there was concern," Tom said. "Then at 24 weeks, they told us.

"The guy did the ultrasound and told us, 'Hey, the doctor will be in to talk to you guys in a minute,'" Tom recalled. "We immediately knew."

A fetal care specialist came into the room and tried to explain about the baby's "very abnormal brain development."

The couple said they had in no way braced themselves for what the doctor was saying.

"They weren't able to make a diagnosis, but they could tell there was significant absence of skull," Tom said. "I passed out."

With her husband on the floor, Jessica said she was "just trying to process — like is this real what they are telling us?"

The doctor suggested they head to the Barnes-Jewish Hospital and Washington University in St. Louis for a second opinion.

It was there, at 27 weeks, the Mastersons had a fetal MRI and were told the baby had acalvaria.

"They had told us with certainty he will not survive birth," Tom said.

Jessica Masterson holds her one-year-old son Owen at their home on Thursday, October 11, 2018. Owen was born missing the top part of his skull and was not expected to survive childbirth. (Photo: Nathan Papes/News-Leader)

The Mastersons were told that terminating the pregnancy under these circumstances, even though she was beyond 20 weeks, was something they could consider.

"We just said absolutely not. That is not something we will consider remotely," Tom said. "We don't really know what this is going to look like but this is our baby. We've been chosen to have him. So we are going to do everything we can to love him as long as we get to have him."

Having been told the baby would not likely survive the pregnancy, Jessica said she dreaded her due date. She loved the feeling of Owen moving around in her belly and didn't want to lose that.

"I felt like while he is in the womb, he is safe," she said. "I can't do anything when he is being born or after he is born. ... I was like, 'He can just stay.'"

All this came just a few weeks after the Mastersons shared their "It's a boy" news on Facebook. Now, they had more news to share.

An On Angels' Wings photographer took this photo of Tom, Jessica, Owen and Ryleigh Masterson when Owen reached 6 months. (Photo: Michelle Renfro/On Angels' Wings)

"We shared on Facebook and it was more like, 'We don't really want a bunch of I'm sorrys,'" he recalled of his May 26, 2017 post. "We really wanted people to hunker down and pray for us, pray for Owen."

Though the prognosis was dim, Tom said they held out hope that the doctors were wrong and their baby would be born healthy. They continued to pray.

Back at Mercy in Springfield, the Mastersons met with a care team comprised of just about every medical professional who might be working with them in the future, all dependent on what happened with Owen.

"It was a huge room with a ton of people there," Tom said. "It was hard to hear, but they walked us through what it will look like if he is born and is deceased upon birth, what it will look like if he is born alive but deceases shortly thereafter, what it will look like if he is still alive."

Tom said they were given choices about what would happen if Owen survives birth — should he go straight to the NICU or spend those few moments with his parents?

Doctors were concerned that Owen's exposed brain would experience trauma during birth. Also, they worried that there were already so many significant neurological issues, Owen's body would not be able to take over those functions that a baby does when it leaves the womb.

The Mastersons were connected with On Angels' Wings, a Springfield-based nonprofit organization that offers free professional photographs and support for children battling a terminal condition from maternity to 18 years. Volunteer photographers have chronicled the family's journey since Jessica was 32 weeks pregnant.

As 40 weeks approached, the Mastersons were given a special card to show the staff at Mercy when it came time for delivery. The card indicated that the birth would doubtfully have a happy ending and should be treated with sensitivity.

Jessica went into labor on Sept. 13, 2017. Owen was born about two hours after Jessica arrived at the hospital.

"He was crying. We were very, very excited to hear that," Jessica said, while looking at her husband. "You were like, 'Oh my gosh, he is alive and he's crying.' ... They just gave him to me and we just held him."

Tom nodded, sharing his memories of that moment.

"Everything we've been told we are not seeing right now," Tom said. "He came out and he was crying. It was like, 'Holy cow, this is crazy.' You don't know what to expect.

"We were really hopeful. We prayed a ton. We knew we had so many people who were praying for us," Tom said. "We honestly felt confident that God was going to do something. We just didn't know what."

But immediately following the joy of Owen's birth, the couple said they feared each moment with him would be their last. They held him and told him goodbye.

"And then a couple more minutes go by," Tom said. "We got to spend time with him. He peed all over Jessica and I got video of that. That was fun. Then it was just going right back into that gut-wrenching 'what is going to happen.'"

What happened is Owen survived. A few hours passed and hospital staff moved the Mastersons into their own room.

"We didn't want to be in the NICU. We wanted his time to be spent with us. We wanted skin-to-skin," Tom said. "We didn't know how many moments we would get with him."

The Mastersons repeatedly praised Owen's care team at Mercy. Since babies with acalvaria rarely survive, caring for Owen was and still is uncharted territory for everyone involved.

Owen made it through the first night. Like all babies, he was hungry. So they fed him.

"It was so nerve-wracking because you are literally worrying, is this going to be the last 60 seconds we are going to get? Is there going to be something that happens and then this is going to be over," Tom said. "Because that is what we've been told."

With no apparent reason for him to stay in the hospital, the Mastersons were allowed to bring Owen home after a day and a half.

For a time, the Mastersons had hospice care, provided by Integrity at no charge.

A nurse made daily visits, but eventually those were scaled back, too.

Owen continues to have occupational and physical therapy. He sees a nutritionist, a speech therapist, an orthotist and a pediatric neurologist.

But, other than an ear infection and small stomach virus, Owen has not been sick or needed any special treatments or hospital stays.

Today, Owen has no mobility. He is unable to crawl, sit or roll over. He is being fitted for adaptive equipment to help him stand and sit up.

They have tried helmets and protective hats, but Owen's screams make it pretty clear how he feels about wearing them. He has a cushioned bonnet to wear while in his car seat and his orthotist recently found another style of fitted hat that might work better.

Owen has passed a hearing screening and they believe he can see close up, at least.

"He responded to a lot of the light test the eye specialist did. That was positive for us because he didn't really make eye contact with us. He does now for very, very brief moments," Jessica said. "But we weren't sure if he could see or didn't know what he was looking at."

Owen is now smiling and laughing. His parents say he often mimics familiar voices.

"If she laughs, he will almost always laugh," Tom said of his wife and son.

Michelle Renfro, the On Angels' Wings photographer who has been following Owen Masterson's story since before he was born, recently took this photo to commemorate his 1-year birthday. (Photo: Michelle Renfro/On Angels' Wings)

"He now reaches for things with his hand to pick up," Jessica added.

At his one-year check-up, Owen weighed in at 18 pounds and 11.5 ounces. He's finally on the growth chart, another small milestone his parents celebrate.

They understand Owen's brain is significantly deformed, and he is at higher risk for seizures. He has been put on seizure medication and is scheduled for an electroencephalogram (EEG).

Still, the Mastersons say they are thankful for every moment they have with Owen and for the support of the community, Springfield Public Schools, Mercy Hospital and their church family at James River Church.

"We don't view this as some tragic accident that is just awful," Tom said. "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."

About On Angels' Wings

On Angels' Wings provides free professional photographs and support for children battling a terminal condition from maternity to 18 years. This includes genetic disorders, chromosome defects that put the child at risk, childhood cancer, heart conditions, and birth loss.

The organization was founded in 2013 by Springfield mom and photographer Michelle Cramer. At the time, Cramer had been volunteering for an organization that offered free stillbirth photography.

Cramer wanted to do more.

"I'm the type of person to really connect with people," she said. "It was hard for me to take a picture and walk away."

An On Angels' Wings photographer took this photo of Tom and Owen Masterson shortly after Owen was born. (Photo: Michelle Renfro/On Angels' Wings)

Cramer said there are now On Angels' Wings volunteer photographers in St. Louis, Kansas City, Joplin, Rolla and several smaller hospitals throughout the state.

She said the organization is completely volunteer-run and dependent on donations.

In addition to photography, On Angels' Wings connects families with other resources as well as advocacy and support groups.

Cramer said Owen Masterson is the first baby born with acalvaria that has been referred to On Angels' Wings.

"Owen is obviously a miracle," Cramer said. "Owen blows my mind. He is so amazing."

An On Angels' Wings photographer took this photo of Owen Masterson shortly after he was born. Owen was born without much of his skull and was not expected to survive birth. (Photo: Michelle Renfro/On Angels' Wings)

On Angels' Wings volunteer photographer Michelle Renfro has chronicled the Masterson's journey since he was born.

Renfro, who is also employed with the News-Leader's advertising team, shot Jessica's maternity photos, was there soon after Owen was born and has continued taking the family's photos since that time. She recently took photos of Owen to commemorate his first birthday.

Renfro said there are many reasons Owen and his family are so special to her.