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SPRINGFIELD, Mo. – Correction: The original version of this story contained inaccurate information about when On Angels Wing's photographer Michelle Renfro began chronicling the family's journey. Renfro first took pictures of the Mastersons after Owen's birth.
Sometimes doctors are wrong.
Like when Tom and Jessica Masterson – then 24-week pregnant – were informed that their baby would probably not survive the pregnancy.
The doctors warned that if their child came to term, he would certainly not survive the trauma of birth.
And if, one way or another, the child survived the birth, the Masterson would not have much time with him.
"It will not be compatible with life," recalled Tom Masterson at the words of a doctor. "He will not survive that."
Tom smiled at baby Owen, now a year old, while he was telling the story.
Owen suffers from acalvaria, an extremely rare malformation that consists of the absence of skull and facial bones.
Owen does not have skulls above his eyebrows and ears to protect his brain. When the disease was discovered during an ultrasound at 24 weeks, doctors were not sure if Owen even had a skin covering his brain.
"Our pastor came to the hospital before he was born and was able to pray with us," Tom continued. "We were convinced that God was going to do something, that Owen had a very specific purpose.We did not know what it was.But we thought that he had a very specific purpose for him. . "
The purpose of Owen, according to his parents, is simply this: shares his story of hope and the power of faith with others.
"It's really a challenge, but I will not change it," said Jessica, rocking Owen in her arms as she has to do it for most of the day. "I love him as he is."
Her husband agreed.
"We are really grateful for him," says Tom. "I'm so happy that we do the experiment, and we do not know what it looks like in the long run." The doctors are like, "We're done telling you. We do not know. We have not been right yet, so we will stop talking about it. "
Owen's doctor told the family that he had discovered about 10 cases in which a child had survived more than a few hours with acalvaria. Owen celebrated his birthday one year earlier this month.
& # 39; We were chosen to have & # 39;
Tom and Jessica Masterson, both from the Jefferson City area, found employment in the Springfield area shortly after graduating from Missouri State University.
Tom landed a teaching position in the Springfield Public Schools and was later hired as an Assistant Director. He is currently director of Jeffries Elementary School.
Jessica was hired as a speech-language pathologist at the Early Years Center, but chose to leave this position to take care of Owen.
About three years ago, they welcomed a two-year-old child, Ryleigh. They have since adopted it.
The couple had a miscarriage shortly before falling pregnant again in 2016.
With Owen, the Mastersons were delighted to have passed the milestone of 20 weeks and to have an ultrasound to know the sex of the baby.
They were told that it was a boy, but the technician was unable to see the baby's head.
"They just said:" We did not see everything, so we'll see you again. "And we were like:" agree. " We had no idea of worry, "Tom said. "Then at 24 weeks, they told us.
"The guy did the ultrasound and told us:" Hey, the doctor will be there to talk to you guys in a minute, "Tom remembered." We immediately knew . "
A fetal care specialist entered the room and tried to explain the "very abnormal brain development" of the baby.
The couple stated that he was in no way prepared for what the doctor was saying.
"They were not able to make a diagnosis, but they could say that there was a significant absence of skull," Tom said. "I fainted."
With her husband on the floor, Jessica said that she was "just trying to deal with – how is that real what they tell us?"
The doctor suggested that they go 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 they had been told that the baby had an acalvarium.
"They had told us with certainty that he would not survive birth," said Tom.
The Mastersons were told that, even if they had exceeded 20 weeks, it was conceivable to terminate the pregnancy under these circumstances.
"We just said absolutely not, it's not something we will consider from a distance," said Tom. "We do not really know what it will look like, but it's our baby.We have been chosen to have it.We will therefore do everything in our power to like it too." long time we can have it. "
After learning that the baby probably would not survive the pregnancy, Jessica said she feared having her delivery date. She loved to feel Owen moving in her belly and did not want to lose that.
"I had the impression that he was safe while he was in the womb of his mother," she said. "I can not do anything when he's born or after he's born. (…) I was like:" He can just stay. "
All this happened just a few weeks after the Mastersons had shared their new "C is a Boy" on Facebook. Now they had more news to share.
"We shared on Facebook and it was more like" We do not really want regrets, "he recalled about his message of May 26, 2017." We really wanted people to be safe. " Heave and pray for us, pray for Owen. "
Although the prognosis is bleak, Tom said that they hoped the doctors were wrong and that their baby would be born healthy. They continued to pray.
Back at Mercy in Springfield, the Mastersons met with a healthcare team that includes just about every health professional who could work with them in the future, all dependent on what happened with Owen. .
"It was a huge room with a ton of people," Tom said. "It was difficult to hear, but they explained to us what it would look like if he was born and died at birth, what would it look like if he were born alive but died soon after, what would it look like? he would still look like alive. "
Tom said that they had a choice between what would happen if Owen survived the birth – should he go directly to the NICU or spend those few moments with his parents?
Doctors feared that Owen's exposed brain would be traumatized at birth. In addition, they worried that there were already so many important neurological problems that Owen's body would not be able to assume the functions of a baby. when he leaves the uterus.
The Mastersons have been associated with On Angels & # 39; Wings, a nonprofit organization based in Springfield, which offers free professional photography and support for children struggling with a life-threatening illness ranging from motherhood to 18 years old. Volunteer photographers told the story of the family since Jessica was 32 weeks pregnant.
As the 40 weeks approached, the Mastersons received a special card showing Mercy staff the time of delivery. The map indicated that birth would no doubt have a happy ending and should be treated with sensitivity.
Jessica started work on September 13, 2017. Owen was born about two hours after arriving at the hospital.
"He was crying, we were very excited to hear," Jessica said, looking at her husband. "You were like," Oh my God, he's alive and he's crying … "… they just gave it to me and we just held it."
Tom nodded, sharing his memories of that moment.
"All we have been told not to see right now," said Tom. "He came out and he was crying.It was like:" Holy cow, it's crazy. "You do not know what to expect.
"We really had hope, we prayed a ton, we knew that so many people were praying for us," said Tom. "Honestly, we were confident that God was going to do something, we did not know what."
But immediately after the joy of Owen's birth, the couple said they feared that every moment spent with him would be the last. They held him and said goodbye.
"And then a few more minutes," Tom said. "We spent time with him, he pissed on it to tell Jessica and I had a video of that, it was fun, then it was like falling back into that heartbreaking". happen. "
Owen survived. A few hours passed and the hospital staff transferred the Masterson to their own room.
"We did not want to be part of the NICU, we wanted to spend time with us, we wanted full contact," said Tom. "We did not know how many moments we would have with him."
The Mastersons have repeatedly leased Owen's care team to Mercy. Since infants with acalvaria rarely survive, Owen's occupation was and remains an unknown territory for all involved.
Owen survived the first night. Like all babies, he was hungry. So they fed him.
"It was so annoying because you are literally worried, will it be the last 60 seconds that we have left? Is there going to be something going on and that will be all right? finished, "says Tom. "Because that's what we were told."
For no apparent reason for him to stay in the hospital, the Masterson were allowed to bring Owen home after a day and a half.
For a while, the Mastersons benefited from free care provided by Integrity.
A nurse made daily visits, but these were eventually reduced.
Owen continues to have professional and physical therapy. He sees a nutritionist, a speech therapist, an orthotist and a pediatric neurologist.
But apart from an ear infection and a small stomach virus, Owen was not sick or needed special treatment or hospital stays.
Today, Owen does not have any mobility anymore. He is unable to crawl, sit or turn around. It is equipped for suitable equipment to help it get up and sit down.
They tried helmets and helmets, but Owen's cries made him understand what he thought of wearing them. He has a padded hat to wear in his car seat and his orthotist recently discovered another type of fitted hat that could work better.
Owen has passed an audience test and they believe that he can see up close, at least.
"He has responded to a lot of the light tests done by ophthalmologists, which is good for us because he did not look us in. He is doing it now for very short time," Jessica said. "But we did not know whether he could see what he was watching or not."
Owen is now smiling and laughing. His parents say that he often imitates familiar voices.
"If she laughs, he'll almost always laugh," Tom said about his wife and son.
"He now catches the objects with his hand," added Jessica.
On his one year record, Owen weighed 18 pounds and 11.5 ounces. He is finally on the growth chart, another small step that his parents celebrate.
They understand that Owen's brain is significantly deformed and that he runs a higher risk of seizures. He has been prescribed antiepileptic treatment and his electroencephalogram (EEG) is planned.
Nevertheless, the Mastersons are grateful for each moment spent with Owen and for the support of the community, the Springfield Public Schools, Mercy Hospital and their family at the James River Church.
"We do not see this as a tragic and simply horrible accident," said Tom. "For some reason, it's what we live and live in. It's a season of life that we are going to live in. Life is full of it."
About the wings of angels
On Angels' Wings provides free professional photographs and support for children struggling with a life-threatening illness ranging from motherhood to 18 years old. This includes genetic disorders, chromosomal defects that put the child at risk, cancer in the child, heart problems and birth loss.
The organization was founded in 2013 by Michelle Cramer, mom and photographer from Springfield. At the time, Cramer volunteered for an organization offering free photographs at birth at birth.
Cramer wanted to do more.
"I'm the type of person who really communicates with people," she said. "It was hard for me to take a picture and leave."
Cramer said there were now volunteer photographers of On Angels' Wings in St. Louis, Kansas City, Joplin, Rolla and several smaller hospitals in the state.
She said that the organization is entirely run by volunteers and depends on donations.
In addition to photography, On Angels & # 39; Wings connects families with other resources, as well as with advocacy and advocacy groups.
Cramer said that Owen Masterson is the first baby born with acalvaria to have been referred to On Angels' Wings.
"Owen is obviously a miracle," said Cramer. "Owen is blowing my head, he's so amazing."
Michelle Renfro, a volunteer photographer for On Angels & # 39; Wings, describes Masterson's journey from birth.
Renfro, who is also part of the News-Leader advertising team, photographed Jessica's maternity photos. He had arrived shortly after Owen's birth and continued to take pictures of the family since that time. She recently took pictures of Owen to commemorate her first birthday.
Renfro explained that Owen and his family were so close to him for many reasons.
"This is not just the fact that it is itself a miracle.This is not just the fact that this is the only emergency session that has had many sessions follow up for me, "said Renfro. "It's not just the fact that the Masterson family is honestly one of the kindest, most dedicated and most loyal parents I've met. Owen has given me the smile during a storm. "
© Springfield News-Leader
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