Over the past year, we have been on a different journey. In August of 2017, we welcomed Gaby Baby into our lives. His arrival was swift (so swift — he was almost an elevator baby) but otherwise uneventful. Born at a healthy 7#10oz, he has been stealing our hearts with his long eyelashes and beautiful blue eyes.
Developmentally, he’s been perfect. He’s hit every milestone on the early end of “on time” — just like his big sister. So when we took him to his routine four-month check-up, we expected a wham-bam appointment with a weigh-in (still chunky), brief Q&A (from the doctor, we pretend we know what we’re doing), couple of injections (why Jake was there) and boom — reassurance that we’re rocking this baby thing and we’d be on our way out.
Instead, it ended in a way we never really prepared for. We got bad news.
Gabe turned four months old on December 27. With Christmas preparations and family in town, I forgot to schedule his appointment. When we arrived home from Austin, I logged into the system to schedule it. There were only two appointments available for the week and neither was with his normal pediatrician. I didn’t mind, as we weren’t a huge fan of the one we’d been seeing, so this would give us the opportunity to see if we meshed more with a different one. In retrospect, I am so grateful that we made the appointment with this doctor who caught something that had been missed by two other pediatricians.
The appointment was fairly standard, though I noticed the doctor examining Gabe a bit differently. He referred to Gabe as “she” before I corrected him, as if he’d barely looked at his chart once he walked in the room and set eyes on him. He was very interested in his head. He then began to ask questions about Gabe’s development, despite the pre-appointment questionnaire I’d filled out. As we began to wrap up, the pediatrician said that everything was great, except… My heart sank.
I wasn’t prepared for a “but” or an “except.” Every appointment we’ve taken our kids to ends in “Everything is great!” Period. End of sentence. End of thought. End of appointment.
He began to talk about the shape of Gabe’s forehead, he mentioned fusing fontanelles, and pointed out how our foreheads are flat and Gabe’s is triangular. He said many words and, as the gravity of what he was saying began to hit me, I only heard a few of them. He handed us a piece of paper with the name of a cranio-facial surgeon he often works with and sent in the order for the vaccinations. Jake seemed oddly unaffected. Lily and I left to the waiting room.
I Googled what I could remember while waiting for Jake and Gabe. Craniosynostosis popped up. Okay, what kind? Metopic. Okay, what next? Surgery… surgery? No. No surgery. Tears ran down my face as I read. Jake brought Gabe out and looked at me oddly. “What’s the matter? Wait, is it because of what the doctor said?” As we walked out of the building, Jake angrily said, “Oh it’s so convenient that his friend is a surgeon in this. He couldn’t even get Gabe’s sex right and he thinks he can diagnose a condition that needs surgery based on touching Gabe’s head? He’s never even seen him before.”
I wanted so badly to believe Jake, but in the few minutes I’d had with Dr. Google, I saw it. I saw a picture of metopic craniosynostosis and the baby’s eyes looked just like Gabe’s. The triangle shape to his forehead (trigonocephaly) was one of the prime factors that took it from mild to needing surgery.
I called and left a message for the nurse of the cranio-facial surgeon. She called me back after 5pm to schedule an appointment two days out. When I told Jake this, he seemed more contemplative of the situation. We began to read what we could stomach about it. It seemed to be sinking in for him that maybe the doctor wasn’t just working on some kind of referral bonus.
The day and a half waiting for the appointment with the cranio-facial surgeon was agonizing. I reached out to a few people closest to us to let them know what was going on and then pretty much just paced and cried for 30-something hours. I didn’t want to read anymore. Everything sounded overwhelming and scary. Cranial surgery, learning delays, brain deformity… it was too much for me to try to process. Our baby was perfect, we’d had no concerns. Why was this happening?
As we drove to the appointment, we optimistically talked about how maybe Gabe’s case was minor. Or maybe we were just looking at it wrong and everything was okay and the hyper-sensitive pediatrician just thinks every baby’s head looks funny.
Unfortunately, that wasn’t the case. Dr. Friel was very nice and reassuring. But as he looked at Gabe, he began to talk. This time I was able to listen, as I’d had almost two days to process information about the condition and anticipate what he may say. He explained craniosynostosis to us again and then continued on, talking about how Gabe does have it and would require surgery and a five-day hospital stay. I’d remained calm and collected until he said that. Then I started to lose it.
He talked about a blood transfusion and the ear-to-ear incision. Through tears I asked if I’d still be able to breastfeed. He assured me I could pump for him until he was able to nurse. I asked if I could stay by his side and he told me I wouldn’t have to leave the hospital. I then asked the question Jake and I needed answered: What happens if we don’t do it? He almost seemed slightly taken off-guard that we’d asked, then quietly and thoughtfully said, “He will… have a really difficult life.” I buried my hands in my face to sob, but it was all I needed to hear to know we didn’t have a choice.
Since then, we’ve met with the neurosurgeon and Gabe had a CT scan done under anesthesia (note: it wasn’t as bad as I’d anticipated and they didn’t have to do any IVs or anything as it was non-contrast). The neurosurgeon confirmed everything we’d been told up to that point. I’d held out a small bit of hope (that’s a lie — I was praying it was possible) that they could do the surgery endoscopically, which is significantly less invasive, typically doesn’t require a blood transfusion, smaller scar, less swelling, shorter hospital stay, etc. Dr. Bui, the neurosurgeon, explained that between him being metopic, over four months, and his eyes (“orbits”) needing adjustment, a CVR/FOA would be required.
And so it’s begun, a new chapter. A very unexpected one. Our baby has a condition. Our baby requires surgery. He is developmentally perfect and has no pressure on his brain right now. He’s non-syndromic, meaning once this is over, it’s over. It was simply an early fusion of bones, nothing more.
We are pre-surgery and one day soon we’ll be “on the other side.” Our baby will be fine. Until then, all we can do is accept what we’ve been handed and try to go on as if things are normal, even though no amount of chaos or moving or travel or anything else has ever felt this abnormal.