Welcome to the blog I really can't believe I'm writing. Our beautiful baby girl has been diagnosed with metopic cranio synostosis. What a mouthful! And what a surprise! Our older son Jonah had a completely different and unrelated tough start when he was born with Congenital Diaphragmatic Hernia and so when I was pregnant with Julia we did everything EXTRA right (since I was pretty sure we'd done everything right the first time). I researched, was followed by a perinatologist, had a quadrillion ultrasounds, took progesterone shots and all the other things to ensure we knew what we were in for this time. Everything looked good! And we had a beautiful and healthy baby girl after an uneventful labor at our local hospital and came home the next day. We talked about how different the experience had been and how much we loved being able to enjoy Julia with no worries. She had a bit of a funny bump on her head and a ridge on her forehead but no problem we thought, we're sure it's just from the tough delivery and the pediatrician agreed.
Fast forward to her one month checkup and it was still there. The pediatrician was now telling me that it was possible the sutures in her head had fused too soon, but we'd wait it out another month and see if it was really the problem. I had a sinking feeling so decided to do a bit of research and make an appointment with a specialist 'just to be sure'. After all, if the pediatrician was comfortable at her 2 month checkup, we could always cancel...right? Nope, no dice. So off to Children's Hospital we went. I am all too familiar with the place after our months spent there with Jonah. By this point I knew what the cranio-facial specialist would say so told my husband and the few people we told to get used to the idea, we were heading back on the medical rollercoaster.
Sure enough, it was confirmed in mid-Dec, just before Julia's 3 month birthday, the very last day of my maternity leave. For those of you who don't know what it is (because I surely didn't a few months ago), metopic craniosynostosis is when the plates in the baby's skull fuse too early, specifically the two that form the seam from the baby's nose up to their soft spot. Because the two bones are fused, they can't grow any more and a ridge forms. If left alone, not only would it bother her cosmetically but it would not leave enough room for her brain to grow, leading to headaches, developmental problems or worse things like seizures. So, next steps:
1) Select a cranio-facial specialist
2) Select and meet with a neurosugeon
3) Get a CT scan in March
4) Review CT scan with cranio doctor
5) Assuming all goes as it should and she grows as expected, surgery sometime between March and June (with possibly one more depending on the surgical approach and how she grows in the next few years)
The oversimplified explanation of the surgery is that they make an incision from one ear all the way over the top of her head to the other ear. They use this as the access point to cut her skull where the suture has fused and also a few other places. The reason they make other cuts is to try to head off future problems by jigsawing the skull together in a way that will hopefully make it so she doesn't need surgery again. They 'overcorrect' a few areas where they anticipate she might not have enough room or her bones might grow too fast, making everything proportional.
The thing to keep in mind here is that it is FIXABLE! Children's Hospital has a way of reminding you there are degrees of 'bad' and being there always reminds me of this. Julia does not have stage three cancer or an inoperable tumor, she has a heart that works and all her parts... the bones in her head are just not growing as expected and we need to fix it. It will suck, no question about it, and there are risks, also no question. But this is not necessarily the end of the world. We will go to the appointments, we will have surgery, we will pray a lot, and, God willing, years from now we will look back on this as a (relatively) short chapter in her life that is over. Just as we do with Jonah, who has no idea how much fear we had in his early days. This is a bit longer process than Jonah's, who was all done with surgeries by 2 months old, Julia won't be able to say that quite so soon, but we pray it will go relatively smoothly and the end result is what matters.
We would greatly appreciate your prayers. I'll try to keep this up-to-date as we learn more. Feel free to ask any questions too, can't guarantee I'll know the answers but I'll be happy to try!
