Trailblazing in the dense woods, watching others leave.

Part of being a trailblazer often means doing something unique, and strange.  But, that is where I find myself. Trailblazing as a dad who openly discusses what it is like when you have a child with cranio. Also, talking about how it has changed your view on fatherhood, and enhanced your skill set for your other kiddos.  Trailblazing is not for the weak of heart.  When it comes to cranio, trailblazing is all I know.

Google News, various medical journal subscriptions, and scholarly articles often fill my inbox letting me know that out there, somewhere, cranio was mentioned. Many times, these are the things that I read first thing in the morning.  Let me tell you, there is not much of a better way to start your day then by kicking back and reading a medical journal where they talk about the statistical skull geometry in pediatrics for the basis of development of anthropomorphic test devises to aid in recovery.  But, then again, I could just be weird.

This article came across my feed this morning, and something about it struck me.  After reading it a few times, I realized, that there is a glaring subtitle that MANY in the cranio community have grown far too accustomed to.

“Doctors had previously told eighteen-month-old Finley’s mom that his condition was nothing to worry about.”

 

Let that sink in.

 

A mother, goes into the doctors, worried about her little one, and is told that there is nothing to worry about.  This happens, not just for cranio, many times. The idea of parental intuition is a WHOLE different topic, for another day.

In many ways our family was extremely lucky when it came to Zoey being born with Bicoronal Craniosynostosis.

The midwife on duty just happened to be the only one on staff that had just happened to have delivered a child with cranio a few months prior in Australia.

We just happened to be at a hospital where one of the top rated craniofacial doctors just happened to be working.

Oh, and just happened to be at the hospital that day, just a few floors up from the NICU, and just happened to be free when the midwife contacted her.

The same midwife who just happened to know of this doctor in the hospital based on a conversation about the baby that she delivered in Australia.

This doctor just happened to be able to get to the NICU (even before I could) to see Zoey, and instantly was able to diagnose her cranio, have it charted, and begin all the things that were needed to get us where we are today.

We also just happen to be followed by a team that has rigorous open communication, briefings, and a lack of rotation.  This means things like for the first five surgeries that Zoey had, we had the SAME anesthesiologist, the SAME nurse, and many of the SAME people in the room. This means that a phone call and an email were sent to our selected (by chance) pediatrician (we love this guy, really) so he had answers to his questions from another doctor before we even saw him. Just so he could focus on her care, and our questions as well.

We have been blessed.  Very blessed.

Many are not granted this scenario.

They spend months looking for answers.  Saying the same things to countless people wearing scrubs and white coats, all with the same look in their eyes.  Until, it just so happens, that they come across the one person who knows. There is a large sigh of relief as they begin to take the steps that many knew were coming, but were just waiting for someone to show them the way.

Regardless of how we started down the path that surrounds Craniosynostosis, and not paying mind to the fact that all of our paths are different (hey, we are all in the same forest at least); there is often a battle cry that arises from our lungs.

We want more people to know about cranio, so countless others do not have to spend months (or years) in the briars blocking the path.  Granted, none of us would choose to be on this path. However, there are some of us out there trailblazing so others have a clearer path.

And then, there is a stark and enraging thing that happens.

For many, they are able to have a single surgery, and they are on the other side.  Their lives go on as though nothing is wrong, and their voices grow silent.  I have seen countless mom-blogs go radio silent within months of their single surgery. Many accounts are deleted or completely re-purposed within 18 months. I am not saying that the mother in the article will cease on her mission.  In fact, I hope that she carries on the banner and makes great strides in raising awareness. I see having her story told in an article in Cosmopolitan as a huge step in that mission.

However, I have been trailblazing for awhile now.  As much as I hope otherwise, I will, instead, suggest that it is far more common for her voice to grow silent over time. Honestly, I get it.  If we were in the position where we only needed a single surgery to repair Zoey’s cranio, we too may have been able to move on with only memories.  We may have been able to move significantly past every tense moment, the times in surgery, the times in recovery, the endless research. For us, and for Zoey, this is not the case. Perhaps that makes us special. Perhaps that is what makes us the trailblazing family that we are.

Too often crowded social spaces are full of the battle cry, only to have the resounding voice grow dimmer and dimmer.  Frequently there are those that find these groups when they need them. They find comfort, they find peace, they find direction. The speak of doing great things to raise awareness, only to grow silent over time. There are a few, like us, that stick around, and answer call after call for help. But the fact remains, that many have left.

This is why I am trailblazing.

Yes, I am still here. My deep, resonant voice has been echoing in a room often not occupied by other men for almost five years. Trust me, I am constantly on the lookout for other dad bloggers openly discussing craniosynostosis. I have yet to grow weary in my attempt to carry the banner of awareness. For me this means helping professionals understand what cranio is, and what it looks like. This is so that when they see it, they know what to do.

This also means exposing what life is like for us, as a family.  Showing  what my daughter has been through, and what she continues to go through. Just so others out there looking for answers can find them here.  I have yet to falter in speaking. I have yet to lose my desire for teaching all those that I come across.  Watching countless others wax and wane in these woods has been, interesting.

But I am not finished.

Live big, love bigger, and be kind, always.

    What are the different types of of surgeries (currently) that are used to correct Craniosynostosis?

    We have done a fair amount of research in all matters relating to craniosynostosis.  Having a child born with the condition quickly opened oureyes into the world of cranio.  We have pulled from sources such as Seattle Children’s, Cincinnati Children’s, and our own experiences with our daughter.  We did our best to compile some explanations of what the surgeries are, what they entail, and when to expect them.  Click any of the links below to learn more (they are listed in order by age of the child). The ones with * are ones that Zoey has been through.

    *Strip Craniectomy

    Endoscopic Strip Craniectomy

    *Posterior Cranial Vault Distraction

    *Fronto-Orbital Advancement

    Le Fort III Advancement

    Monobloc Frontofacial Advancement

    Le Fort III and Monoblock Advancement by Distraction Osteogenesis

    Le Fort I Advancement, or Upper Jaw Advancement

    Mandibular Osteotomy

    Final Facial Contouring

      What are the different types of Craniosynostosis?

      The types of Craniosynostosis are classified by what suture of the skull it affects. Here is a list of the types, and some information about each one.

      SAGITTAL:

      This is the most common (40%-58%) of all diagnosed cranio cases and affects more males than females. It is caused by early closure of the sagittal suture and results in scaphocephaly. Infants will often have a protruding forehead, an elongated head, and protrusion at the back of the skull.

      CORONAL:

      This is the second most common form and effects mostly females.  It is caused by closure of the coronal suture on either side resulting in anterior plagiocephaly, or bilateral resulting in brachycephaly. Infants affected will often have an elevation of the eye socket, flattening of the eyebrow ridge, and displacement of the nose on the affected side.

      METOPIC:

      This is the third most common form and occurs predominantly in males. It is caused by closure of the metopic suture, located between the soft spot and the nose, and results in trigonocephaly. Infants will often have a prominent ridge down the middle of the forehead, a pointed forehead, and eyes that seem too close together.

      LAMBDOID:

      This is one of the more rare types of Craniosynostosis.  It is caused by closure of the lambdoid suture which runs across the skull along the back of the head. It results in posterior plagiocephaly (not to be confused with positional plagiocephaly).

      FRONTOSPHENOIDAL:

      This is one of the most rare types of Craniosynostosis. It is caused by closure of the frontosphenoidal suture on either side, located near the eye socket, resulting in frontal plagiocephaly. Very rarely the closure can be bilateral. Infants will have a flattening on the front of the head toward the affected side, and possibly indentation near the temple or eyebrow bones.

      MULTIPLE SUTURE:

      Approximately 5% of diagnosed cases involve two or more sutures fused prematurely and are categorized as complex forms of craniosynostosis.  These cases most frequently have increased intercranial pressure, and are associated with developmental delay and a high rate of multiple procedures being medically necessary.

      PLAGIOCEPHALY:

      This term describes a flat place on the back or side of a baby’s head. It is caused by pressure on the bones of the skull before or after birth. This usually happens because of the way a baby likes to lie (their positional preference) in their first few months of life.