by Tom & Jessie Masterson
Parents to Owen
Following a previous miscarriage, we were experiencing a ‘typical’ pregnancy — until a sonogram changed everything. At our 20 week ultrasound, Owen’s head could not be viewed and we were told to reschedule for 4 weeks out. At the time, we had no suspicion that anything was wrong.
However, during our 24 week ultrasound, we knew something was off because the sonographer sent the internal and fetal medicine doctor to our room. It was revealed that Owen’s brain and skull were not typically developing and, in fact, were very abnormal. We were not given a diagnosis yet, but were told that the condition was fatal.
Jessica sat there in shock trying to process it all; it did not feel real. Tom actually passed out, unable to process this tragic news. We then had to begin the unbearable process of notifying our family and friends of this news — those were some of the toughest phone calls we have ever made.
After speaking with a genetic counselor, we chose to travel to St. Louis to have another ultrasound and fetal MRI completed to determine a diagnosis. We were very hopeful the first ultrasound was wrong, believing God had something bigger than the news we had heard. However, after meeting with the fetal care team in St. Louis we received a diagnosis of Acalvaria, an extremely rare malformation consisting of absence of the calvarial bones, dura mater, and associated muscles in the presence of a normal skull base and normal facial bones. Babies who have Acalvaria are unlikely to survive birth and, if they do, are not known to survive for more than hours. Some babies do not even make it to term.
During our appointment in St. Louis, the team talked with us about what options we may have as we proceeded with the pregnancy. There were only two: continue on with the pregnancy or terminate since the condition was considered fatal. The care team was incredibly supportive throughout this conversation, allowing us to guide it. For us, terminating the pregnancy was not an option — God had blessed us with this little boy and our job was to care for him, however that looked.
For the next 17 weeks, we attended prenatal appointments as if it were a typical pregnancy and also had some additional ultrasounds. Most importantly, for the next 17 weeks WE PRAYED like we never had before. Our family, friends, church, and people we didn’t even know (and still do not) joined us in prayer and believed with us for a miracle.
We grew immensely in our faith during this time, relying on God more than we ever had our entire lives. It definitely wasn’t an easy time at all, but we grew so much and are thankful for God’s provision during this time and every day. We knew we had a great support system before Owen’s diagnosis, but during these incredibly hard times, it surpassed expectations. We are deeply thankful for those that helped us through this time and continue to be very involved in our lives.
Jessica carried Owen for 40 weeks and 4 days. On the day of delivery, we let one of our pastors know we were headed to the hospital, as well as On Angels’ Wings. One of our amazing pastors, Justin Jahanshir, met us at the hospital, praying over Owen and believing God for a miracle.
Later we were joined by Michelle Renfro, an OAW photographer. Michelle was there to capture some incredible images of us welcoming Owen into this world, defying the odds. We are forever thankful for these pictures, as they perfectly capture God’s blessing. Michelle and OAW have continued to be an important part of our family, capturing Owen’s birthdays and other life events.
We prayed for Owen to be completely healed, but he wasn’t. God’s plan for Owen was different. Instead, Owen was born ALIVE despite his diagnosis, and he turns four years old this month! PRAISE GOD! God did not create a full skull for Owen and He did not form his brain in a typical way, but Owen is here, alive and bringing joy to all of those that know him.
In July of 2021, we welcomed a little boy named Judah, which means PRAISE. He is our “sunshine baby,” which is a baby who is born after a warrior sibling (with a terminal diagnosis) still fighting the good fight. He is a wonderful addition to the family God has blessed us with. We are very blessed for Owen to be here as we welcome a new baby. It’s been so great to see Owen’s interactions with Judah. Owen may not be mobile or verbal, but we can see the love he has for Judah when he smiles and laughs around Judah. We also have a daughter, Ryleigh, who loves being a big sister to Owen and Judah. They are huge blessings to our family. We are thankful to be blessed richly by God and to see His work daily.
Owen is a very unique boy and we wouldn’t change a thing about him. God continues to provide for all of Owen’s needs. He’s truly a miracle and we hope his story helps lead others to Jesus. We love this boy with all our hearts and are thankful for him each and every day.
OAW note: In 2018, Owen made global news headlines as the family celebrated his 1st birthday. A Google News search of “Owen Acalvaria” gleans pages and pages of stories in a multitude of languages. Potentially, hundreds of thousands of people have read Owen’s story and been impacted by this sweet miracle. A couple of years ago, the Mastersons shared their story in video for OAW, which you can view below. We are so honored to be a part of capturing the light he shines on this world!
