[ad_1]
Heart warming
Owen suffers from acalvaria, an extremely rare malformation that consists of the absence of skull and facial bones.
SPRINGFIELD, Missouri – 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 Masterson after Owen's birth. Some doctors are sometimes wrong. It was like when Tom and Jessica Masterson, who were 24 weeks pregnant, had learned 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. compatible with life, "recalled Tom Masterson about a doctor. "He will not survive that." While he was telling the story, Tom smiled at his baby, Owen, now a year old. Tom Masterson holds his son Owen, one year old, at his home on Thursday, October 11, 2018. Owen was born missing the top of his skull and was not expected to survive childbirth. (Photo: Nathan Popes / News-Leader) Owen suffers from acalvaria, an extremely rare malformation consisting of an 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 that 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 felt that he had a very specific purpose. "According to his parents, Owen's goal is simply this: to share his story of hope and the power of faith with others." It's quite challenging, but I would not change it. "Jessica says, rocking Owen in her arms as she has to do it for most of the day." I love her as he is. "Her husband agreed." We are very grateful to her, "she said. Tom says, "I'm so happy we have to live this, and we do not know what it looks like in the long run." The doctors are like, "We've finished telling you, we do not know. not yet right, so we'll stop talking. "
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 for him & # 39; Tom and Jessica Masterson, both from the Jefferson City area, found employment in the Springfield area shortly after graduating from Missouri State University. as deputy director. He is currently Director of Jeffries Elementary. 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 2-year-old child, Ryleigh. They have since adopted it. The couple had a miscarriage shortly before falling pregnant in 2016. Owen, the Masterson said they were delighted to have reached the threshold of 20 weeks and have had 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 simply said, "We have not seen everything, so we will see you again. And we said to ourselves, "Okay. "We had no idea of worry," Tom said. "Then, at 24 weeks, they told us." The guy did the ultrasound and said, "Hey, the doctor will be here to talk to you in a minute," Tom recalls. "We immediately knew." A fetal care specialist entered the room and tried to explain the "very abnormal development of the baby's brain." The couple stated that they were not at all prepared for what the doctor was saying. 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 treat – how is that true 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.He was there, at 27 weeks, the Masterson had a fetal MRI and they were told that the baby had acalvaria.
"They had told us with certainty that he would not survive at birth," said Tom.Jessica Masterson is holding his one-year-old son Owen at his home on Thursday, October 11, 2018. Owen was born , missing the upper part of her skull and not having to survive the delivery. (Photo: Nathan Popes / News Leader) Masterson has been told that it is feasible to terminate the pregnancy under these circumstances, even if it had exceeded 20 weeks. We simply said no. This is 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 love it as long as we can have it. After learning that the baby would probably not survive the pregnancy, Jessica said she feared to have a child. 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," she said. "I can not do anything when he's born or after he's born. … I thought, "He can only stay." All of this happened just weeks after the Masterson had shared their news "It's a boy" 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 the age of 6 months. (Photo: Michelle Renfro / On Angels' Wings) "We shared on Facebook and it was more like:" We do not really want to be sorry, "he said in his May 26, 2017 article. We really wanted people to pile up and pray for us, pray for Owen. "Although the prognosis is bleak, Tom said they hoped the doctors were wrong and that their baby would be born healthy. They continued to pray, and back at Mercy in Springfield, the Mastersons met with a care team of almost all health professionals who could work with them in the future, all depending on what is going on. had passed with Owen a ton of people there, "said Tom," It was difficult to hear, but they explained to us what it would look like if he had been born and died at birth, what would it look like if he were born alive but died little of mps after, what he would still look like alive. "
Tom explained that they had a choice between what would happen if Owen survived the birth – whether to go directly to the NICU or spend a few moments with his parents? In addition, they feared that there were already so many important neurological problems that Owen's body would not be able to take over the functions of a baby when he left the uterus. The Mastersons have been associated with On Angels' Wings, a non-profit organization based in Springfield, which offers free professional photography and support for children with a life-threatening illness ranging from motherhood to 18 years of age. Volunteer photographers told the story of the family since Jessica was 32 weeks pregnant. As we approached 40 weeks, the Masterson received a special card to show to Mercy staff at 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 very happy to hear that," said Jessica, 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." Everything we were told about us did not see right now, "said Tom," he came out and was crying, it was like, "Holy cow, it's crazy." You do not know what to expect. "We were very hopeful. prayed a ton, we knew so many people were praying for us, "said Tom," Honestly, we were confident that God was going to do something, we just did not know what. "But immediately after the joy of the birth of Owen, the couple said he feared that every moment spent with him would be the last one.They held him and said goodbye to him.And then, there are only a few minutes left "Tom says," We have to spend time with him. He peeped all over Jessica and I had a video of that. It was fun. Then we were back in this heartbreaking "what will happen".
Owen survived. A few hours passed and the hospital staff took the Mastersons to their own room. We did not want to be at INSI. We wanted his time to be with us. We wanted skin to skin, "said Tom. "We did not know how many moments we would have with him." The Mastersons have repeatedly praised Owen's care team at 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 we are going to have? Will there be something that will happen and then it will be over, "said Tom. "Because that's what we were told." In the absence of 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 time, the Mastersons had palliative care, provided by integrity without costs. A nurse made daily visits, but these were eventually reduced. Owen continues to pursue professional and physical therapy. He sees a nutritionist, a speech therapist, an orthotist and a pediatric neurologist.But other than the ear infection and the tiny stomach virus, Owen has not been ill nor Neither special treatment nor hospitalization. Today, Owen does not have any mobility anymore. He is unable to crawl, sit or turn around. He is equipped for adaptation equipment that will help him get up and sit down. They have already tried helmets and protective hats, but Owen's shouts clearly show what he thinks 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 auditory examination and they believe that he can see up close, at least. He answered a lot of the brightness tests done by ophthalmologists. It was good for us because he did not really have eye contact with us. He is doing it now for very, very brief moments, "Jessica said. "But we did not know if he could see or know what he was watching." Owen is now laughing and laughing. His parents say that he often imitates familiar voices. "If she laughs, he'll almost always laugh," said Tom of his wife and son. Michelle Renfro, an On Angels' Wings photographer following Owen Masterson's story since her birth, recently took this picture to commemorate her first birthday. (Photo: Michelle Renfro / On Angels' Wings) "He now catches things with his hand," added Jessica. In his one-year record, Owen weighed between 18 pounds and 11.5 ounces. He is finally on the growth chart, another small milestone celebrated by his parents. They understand that Owen's brain is significantly deformed and 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 consider this a tragic accident is just horrible," said Tom. "For whatever reason, here's what we can live and experience. It's a season of life that we are going to live now. Life is full of it. About On Angels 'Wings On Angels' Wings provides free professional photography and support for children with a life-threatening illness, from motherhood to age 18. This includes genetic disorders, chromosomal abnormalities that put the child at risk, cancer in the child, heart problems and birth loss. The organization was founded in 2013 by the photographer and photographer Michelle Cramer of Springfield. At the time, Cramer had volunteered for an organization offering free stillborn photographs. Cramer wanted to do more. "I am the kind of person who really makes connections with people," she said. "It was hard for me to take a picture and leave." A photographer from On Angels & # 39; Wings took this picture of Tom and Owen Masterson shortly after Owen's birth. (Photo: Michelle Renfro / On Angels & Wings) Cramer said there were now volunteer photographers on Wings & # 39; Wings in St. Louis, Kansas City, Joplin, Rolla and several other smaller hospitals in the state. and depends on donations. In addition to photography, On Angels & Wings connects families to other resources, as well as 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's blowing my head. He is so amazing. The photographer from An On Angels & # 39; Wings took this picture of Owen Masterson shortly after his birth. Owen was born without much of his skull and was not supposed to survive the birth. (Photo: Michelle Renfro / On Angels & Wings) Since her birth, Michelle Renfro, a volunteer photographer on Renels Wings, tells the story of Masterson. shortly after his birth, Owen 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 had many reasons to feel so dear to him. This is not just the fact that he himself is a miracle. It's not just the fact that this is the only emergency session that has had many follow-up sessions for me, "said Renfro. "Honestly, the Masterson family is one of the kindest, most dedicated and most loyal parents I have ever met. It is also that Owen has given me smiles during a storm. © Springfield News-Leader
The original article can be found by clicking here
Source link
