When Tom and Jessica Masterson, were told that their baby wouldn’t survive the pregnancy, at 24 weeks, they never allowed themselves to become negative or take their words seriously.
The doctors warned that if their child would make it to full term, he would not survive the trauma of birth. Even if it did survive birth, they would not have much time with him.
“He won’t be compatible with life,” Tom Masterson recalled the doctor’s words. “He will not survive this.” Tom say smiling now holding baby Owen, who is a year old, as he tells his story.
Owen was born without the top part of his skull as he has Acalvaria, which is a very rare condition where a malformation consisting of the absence of skull and facial bones occurs. He does not have a skull above his eyebrow and ears to protect his brain.
When Owen’s condition was discovered during ultrasound at 24 weeks, the doctors did not know 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 said. “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.”
According to Owen’s parents, his purpose, 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.
Tom said, “We are so thankful for him,” and added “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 that he has seen about 10 cases similar to Owen’s, where the baby barely survived more than a few hours with Acalvaria. Owen recently celebrated his first birthday earlier this month.
Tom and Jessica Masterson, hail from Jefferson City area, and found jobs in the Springfield area just after graduating from Missouri State University.
Tom got a teaching job at Springfield Public School and was later hired as assistant principal. Now he is the principal at Jeffries Elementary.
Jessica worked as a speech therapist at the Early Childhood Center, but had to leave it to take care of Owen.
Three years ago, they took in and then adopted 2-year-old Ryleigh.
They miscarried a while ago before becoming pregnant again in 2016. They were thrilled when they got to the 20-week point to have an ultrasound to learn the baby’s gender.
The technician informed them it was a boy, but he was unable to view the baby’s head.
Tom said, “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,” but soon “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 entered the room, and tried to describe to them about the baby’s “very abnormal brain development.”
The couple were not prepared at all 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 passed out on the floor, Jessica said she was “just trying to process — like is this real what they are telling us?”
The doctor told them to go to Barnes-Jewish Hospital and Washington University in St. Louis for a second opinion. It was there, at 27 weeks, when they had a fetal MRI and were told the baby had alcalvaria.
“They had told us with certainty he will not survive birth,” Tom said.
The Mastersons were given the option of terminating the pregnancy even though they were beyond 20 weeks, was something they could choose.
“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.”
Jessica was meanwhile dreading her due date as she the doctors told her that Owen would not survive childbirth, she just loved the feeling of Owen moving around in her belly and did not want to let it go.
“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.'”
The Mastersons had just shared their “It’s a boy” news on Facebook and now with all this happening, they had more news to share.
“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.”
Through all this, the Mastersons continued to pray and had faith that their baby would be born healthy and hoped that the doctors were wrong.
They met with a care team at Mercy in Springfield, which comprised of just about every medical professional who might be working with them in the future, depending on what would happen 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 asked if Owen survives birth — should he go straight to the NICU or spend those few moments with them?
The Doctors were worried about Owen’s exposed brain during birth, and also the many significant neurological issues. Would he be able to take over the normal functions a baby does when it leaves the womb?
The Mastersons were connected with On Angels’ Wings, a Springfield-based nonprofit organization which offered free professional photographs and support for children with a terminal condition from maternity to 18 years of age. Volunteer photographers have since recorded the family’s journey since Jessica was 32 weeks pregnant.
With 40 weeks approaching, the Mastersons were given a special card to show staff at Mercy, at delivery, the card indicated that the birth would doubtfully end happily, and the delivery should be done sensitively.
The day of the delivery, Jessica went into labor and Owen was born about two hours later. “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 agreed nodding.
“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.
Tom said, “We were really hopeful. We prayed a ton. We knew we had so many people who were praying for us,” he added, “We honestly felt confident that God was going to do something. We just didn’t know what.”
But immediately after his birth, they feared each moment with him would be their last, and so held him close 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.'”
After a few hours passed, the 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 only had words of praise for the care team at Mercy, as babies with alcalvaria rarely survived, it was still uncharted territory for everyone involved.
Owen survived the first night and like other 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.”
As there was no real reason for them to remain in the hospital, the Mastersons were allowed to bring Owen home after a day and a half.
They had hospice care for sometime, provided by Integrity at no charge. A nurse made daily visits, but eventually those were scaled back, too.
Owen’s occupational and physical therapy still continues even today, and he sees a nutritionist, speech therapist, an orthotist and a paediatric neurologist.
But, apart from a common ear infection and small stomach virus, Owen has been leading a healthy life.
Today, Owen cannot crawl, sit or roll over, that means he has no mobility, but is being fitted for adaptive equipment like helmets, protective hats, but Owen’s screams make it pretty clear that he does not want 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.
He recently passed a hearing screening and doctors 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 and often mimics familiar voices, according to his parents.
“If she laughs, he will almost always laugh,” Tom said of his wife and son.
“He now reaches for things with his hand to pick up,” Jessica added.
Owen weighed in at 18 pounds and 11.5 ounces at his one year checkup and is finally on the growth chart, which is another milestone his parents celebrate.
They know that Owen’s brain is highly deformed, and is at higher risk for seizures. He has been put on seizure medication and is scheduled for an electroencephalogram (EEG).
Amidst all this, the Mastersons are thankful for their time spent 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.”
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.
It was founded in 2013 by Springfield mom and photographer Michelle Cramer. She used to be a volunteer for an organization that offered free stillbirth photography, and wanted to 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.”
Apart from photography, On Angels’ Wings connects families with other resources as well as advocacy and support groups. Cramer said Owen was the first baby born with alcalvaria that was referred to On Angels’ Wings.
“Owen is obviously a miracle,” Cramer said. “Owen blows my mind. He is so amazing.”
On Angels’ Wings volunteer photographer Michelle Renfro has chronicled the Masterson’s journey since he was born.
Renfro said “It is not just the fact that he himself is a miracle. It is not just the fact that it is the only emergency session that has had numerous follow-up sessions for me,” she added “It is not just the fact that the Masterson family is honestly some of the sweetest, most dedicated, and faithful parents I have run into. It is also that Owen has given me the gift of smiles in a storm.”
What the Bible talks about having faith as big as a mustard seed and telling the mountain to move and it will, is exactly what the Mastersons have done. They have hung onto their precious baby and trusted the Lord with this difficult situation. God bless them.