Help Owen Overcome Craniosynostosis

Owen Update-

We spent the day at Cook Children’s in Prosper meeting with the craniofacial specialist. She was incredibly kind and compassionate, and we’re truly grateful for the care she showed our sweet baby boy. She ordered a stat CT & confirmed what I had feared—Owen has officially been diagnosed with sagittal craniosynostosis, a rare condition where the bones in a baby’s skull fuse too early. In Owen’s case, the sagittal suture is completely fused, causing his head to grow in a long, narrow shape called scaphocephaly, instead of the rounded shape that allows the brain to grow safely and evenly.

One of the most concerning signs is that his fontanel (soft spot) is frequently tight and swollen—an indicator of increased intracranial pressure. It has also grown tremendously in length to allow for brain growth. His head has also grown unusually long due to the restriction in growth, and we’ve also noticed that his right forehead is beginning to protrude far more than the left, which can happen as the skull compensates for the fused areas.

If left untreated, this condition can and will lead to increased pressure on the brain, developmental delays, chronic headaches, seizures, vision problems, and other serious complications. At this point, surgery is the only option to correct the growth pattern and protect his future development and we are going to ensure that he gets his operation as soon as possible.

To be quite frank, the moment she told us, everything just… blurred. You know in Charlie Brown how the adults’ voices sound like “wah wah wah”? That’s exactly how it felt. Like her words were echoing through a fog, in one ear and out the other. She tried to walk us through it so patiently, answering all of our questions, but I couldn’t process anything and still feel like I’m in shock.

As I mentioned last week, there are two possible surgical paths:

• Endoscopic Craniosynostosis Surgery- The less invasive option that is done at/before 3 months of age. Through two incisions, the surgeon removes the fused part of the skull to allow the brain to grow normally. They also call this a endoscopic strip craniectomy.

*Pros: Shorter surgery time, less blood loss, faster recovery, and smaller scars.

*Cons: Requires Owen to wear a custom-fitted helmet 23 hours a day for several months afterward to reshape his head as it grows. He will need multiple helmets as he grows. These are typically not covered by insurance & I will likely have to take him to Ft. Worth weekly for helmet adjustments.

*Urgency: We’re racing the clock to see if he still qualifies for this option because this is truly what we are hoping and praying for.

• Open Cranial Vault Reconstruction Surgery- This is a major surgery & typically done if the baby is too old or not a candidate for endoscopic surgery. The surgeon opens a larger portion of the skull, reshapes the bones, and reconstructs the skull by hand.

*Pros: Reshapes the skull during surgery, often with less reliance on helmet therapy afterward.

*Cons: Much longer surgery, greater blood loss (often requires transfusions), longer hospital stay, and a more intensive recovery.

Right now, we’re waiting to hear back from Cook Children’s Hospital in Fort Worth, where a specialized surgical team made up of a neurosurgeon and cranio-surgeon will determine which option Owen qualifies for. Regardless of the path, the journey ahead includes surgery, recovery, and months of helmet therapy to reshape and protect his developing skull.

As you can imagine, this has been one of the most emotional and overwhelming times of our lives. Owen is just 3 months old—he should be soaking up newborn snuggles and milestones, not facing surgery. My heart breaks for him. This isn’t how these early months were supposed to look. Chris and I have always taken pride in handling things on our own and being the ones to help others when they need it. But the truth is—we’re really struggling. We were thrown into this journey overnight, and the emotional weight has been matched by a growing financial burden we simply can’t carry alone.

Owen’s new insurance won’t begin until September 1st, and we’ve already had to begin paying out-of-pocket for the medical care he urgently needs. Just today, we spent over $4,000 on his CT scan and the craniofacial consultation alone. And in order to care for Owen through surgery and recovery, I’m going to have to go on FMLA without pay.

So many of you have reached out asking how you can help over the past week. & I’ll be completely honest—what we need the most right now is financial support. Our goal is to raise $25,000 to help cover:

• Out-of-pocket medical bills, including imaging, consults, and testing

• Travel to and from specialists and surgical centers

• Helmet therapy (Owen will likely need multiple helmets, each costing $3,000–$5,000)

• Lost income while I care for Owen

• Surgery and hospital expenses not covered by insurance

Owen is such a joyful, strong little boy. His smile lights up our home, and we are doing everything we can to give him the healthiest, happiest future possible. This journey isn’t one we ever imagined, but we’re walking it with faith, hope, and love—and we’re incredibly grateful to have so many of you walking it with us. We know God has a plan for our sweet boy.

Whether you’re able to donate or simply share our GoFundMe page, please know how much it means to our family. Every single donation makes a difference.

Thank you from the bottom of our hearts—for your love, your prayers, your support, and for believing in Owen’s bright future.”

With love,

Tori & Chris