When she was a few months old, Haley was diagnosed with a condition called unicoronal craniosynostosis. Haley, who is now 13 months old, had surgery at OHSU Doernbecher this spring and is finishing post-operative helmet therapy. We sat down with her mom, Jessie, to learn more about their family’s story.
Would you walk us through Haley’s diagnosis?
I first noticed something was off when Haley was born. I was concerned about the shape of her forehead and I discussed this with our pediatrician at our two-week checkup. She said it was because Haley was such a big baby and that it would likely just be temporary.
But something in me knew that there was more to it. I kept Googling and Googling until I found faces that looked like Haley’s. I watched one video about a baby who ultimately was diagnosed with a condition called craniosynostosis, and I just knew. My whole body was vibrating.
I did more research and brought my notes to Haley’s checkup when she was 2 months old. Thankfully, I had a pediatrician who listened. She ordered a CT scan and said, “Let’s see if we’re wrong.”
When the scan findings came back, we learned that Haley had a partial fusion on her right coronal suture, which was consistent with craniosynostosis.
What happened after her diagnosis?
We were referred up to OHSU Doernbecher Children’s Hospital shortly after receiving the diagnosis. We met with Lisa Crupi in the craniofacial clinic, and that’s where I finally got to ask some of my deep, deep questions. She explained everything, step by step, and I left our conversation with so much peace despite the scary diagnosis. Physician assistant Alix Wherley was also so helpful in providing answers to my questions – I call her my guardian angel. We later met with her surgeons, Dr. Erik Wolfswinkel and Dr. Nate Selden. The entire team’s confidence and their ability to handle Haley and just take care of her melted away so much fear.
Because Haley was diagnosed so early, we had the gift of time. She wasn’t in any kind of position where her surgery needed to be rushed. We were also fortunate to live in Hillsboro at the time, which made for short trips up to Doernbecher.
Getting that early diagnosis and intervention was a game changer for Haley and for our family’s ability to process and let this news sink in. We had plenty of time to secure childcare for our son and arrange for time away from work. My husband is a pastor, so our church community was extremely involved along the way.
Haley wound up having a surgical procedure to help reshape her skull: Cranial Vault Reconstruction (CVR), where part of her fused skull was removed, and Frontal Orbital Advancement (FOA), which advanced her forehead to help reconstruct her face. The main goal of the surgery was to reshape her skull to allow for her brain to grow and develop.
Everything went great with the surgery – we were told that Haley woke up feisty, which was a good sign! She was swollen and nauseous through her recovery, but we were ultimately able to go home three days after her surgery.
We let her incision heal and let the swelling go down for a couple of weeks, then Haley got fitted for a soft helmet. This is meant to keep the shape of the head and give her a layer of protection. We’re expecting that Haley will wear hers for up to four months, but it’s different for every baby.
Last month, we celebrated Haley’s first birthday! She’s doing great. We’ll return to Doernbecher in a few months and then see them about once a year until she’s 6.
What have you learned along the way that might be helpful for other families navigating similar diagnoses with their kids?
I feel like every mom says this, but your mom gut is not wrong. Listen to it. It’s okay to approach someone who is a professional with all of this expertise and tell them that you know your child best. We wouldn’t have gotten Haley’s diagnosis so early if I didn’t push – even with her pediatrician, who I love and respect. You’re advocating for someone who can’t speak. I’m so grateful that I was able to listen to that fire in the pit of my stomach that told me something needed to be said.
Once you find yourself part of this “cranio world,” you discover that it’s a family. I started an Instagram account for family and our church community to follow along with Haley, and it’s been wild! I’ve had moms from all over the place message me with their questions: Why did you choose to have the surgery? How has it been for you? I’m really scared – where should I go? It’s been really nice for me to be a resource for other people because it’s so much to take in at once, especially when you’re very freshly postpartum.
I always recommend that other families seek care at institutions like Doernbecher, where everyone is so good at what they do, and they do it often. I really couldn’t have dreamed up a better team for Haley. They’re not only professionals, they’re genuinely really cool people. Everybody – from the surgeons to the team in the aftercare room to the nurses – was so empowering and kind. Doernbecher really does a great job of making a very scary experience the best it can possibly be.