We found out Landon was going to have a “long head” when I was about 32 weeks pregnant – during an ultrasound that was a follow up to a car accident I was in at 24 weeks. My doctor didn’t elaborate on what that meant, she just kept saying “it’s not something we’d have to worry about until after he’s born.” I even searched the words “baby long head” to see if Dr. Google could tell me anything else – but came up with nothing. Eight weeks and an extremely difficult labor later, Landon was here. Perfect, adorable, amazing.
We did notice he had a watermelon shaped head (when viewed from the top) but just figured that was the natural shape of his skull. At his 2 week check up I asked the doctor if we should be concerned that he couldn’t hold his head straight forward (to face up) while lying on his back. The doctor took a second look at his head and felt for a soft spot and noticed it was missing. I was by myself at the appointment and she was trying very hard not to overwhelm me with information. Her hunch was that he had Craniosynostosis and wanted me to call Seattle Children’s immediately for an appointment to confirm the diagnosis. I didn’t make it very far in the car on the way home before I lost it. I had to call my husband and try to relay the information and remember words I’d never even heard before about a potential condition our 2 week old son had. I couldn’t even speak when he answered the phone.
I called Seattle Children’s Craniofacial Team as soon as I got home. I remember sounding out the word crane-ee-oh-syn-o-sto-sis on the phone and trying to get an appointment as soon as I could. Luckily they were able to get us in quickly and within days it was confirmed that Landon had Craniosynostosis – Sagittal Suture and needed major surgery.
We were given the same options as most families are – endoscopic surgery with helmet therapy or cranial vault reconstructive surgery. After weighing the pros and cons of each we made the excruciating decision to go with the more invasive surgery and to have the doctors perform the cranial vault reconstruction surgery. So began a 5 month wait.
The wait was worse than surgery day. Seattle Children’s did such an amazing job taking care of him and us – everything flew by. He was in active surgery for a little over an hour an a half. We handed him off to the anesthesiologists around 7:30 am – he was smiling the whole time, despite being hungry – and surgery was wrapped up by 11 am. We were even able to have lunch with Shelby when she hand delivered our Care Package while we waited for him to get settled in his room. By 2 pm we were back by his swollen little side.
His recovery went very well and his eyes were never swollen shut, thankfully. He had surgery on Friday and we were home by Monday afternoon. By Wednesday (5 days post-op) he attended my work’s Halloween party – dressed as our little Super Hero, of course. It’s now been 2 months and some odd days since his surgery. Only 1 of his 74 external stitches is still there – it’s stubborn like him. His personality has remained constant since the day he was born – happy, smiling, and ready to see the world.
We are incredibly lucky because we only live a few minutes from Seattle Children’s and were able to have family stay at our house and even venture home ourselves to clean up. It made us feel so blessed but at the same time heartbroken for the families that have to travel so far for such a scary surgery – to stay in an unfamiliar city, without their normal support systems close by. We can’t thank our friends and family enough! Those that stayed to help take care of him, brought us meals in the hospital and at home, spoiled him with new toys and plush stuffed animals, balloons, cards, those that sent messages from across the country, even overseas, everything that everyone did. His village is enormous and we know how much he’s loved. He is truly a rockstar.