Craniosynostosis. An Earnest Follower Writes Her Experience for Earnest Mom.

When earnest baby goes for her well baby checks the doctor always feels her fontanels (soft spots), to make sure they are doing what they should do.  While chatting with my friend and earnest follower, Nicole she had told be of her son’s craniosynostosis; when I realized I had never heard of the condition, I asked her to share her story so all of us moms, dads, grandparents and caregivers can be more aware of this potentially serious condition.  Here is her story (thank you Nicole).  x. earnest mom

In the past 6 days, I have endured the puzzling stares from strangers when they look at my adorable 12 week old son. Why are they puzzled?  Because he is wearing a helmet. He looks like a miniature football player or hockey player sporting a light blue camouflage patterned helmet. He wears it pretty well I must say. But obviously he looks different than most other babes and it calls attention.  I have been here before and the stares don’t bother me.  I am always eager to answer the questions that only a few onlookers will ask.

Our first son, now almost six years old, wore a helmet as well. He was only in one for about seven weeks. He was diagnosed with plagiocephaly which is a relatively common condition caused by him favoring a certain head position.  The favoring causes flat spots on his skull. The helmet corrects this condition. I am happy to say the short stay in the helmet has shaped his skull into the beautiful round head that it is today. But who would have thought that we would have a second child in a helmet and for a completely different reason.

Our third son Weston, was born on March 9, 2015.  He is perfect. Just a happy relaxed little guy. He loves to snuggle and smiles with dimples that melt your heart.  When Weston was 7 ½ weeks old, I noticed something was missing on my beautiful boy. The soft spot medically known as the fontanelle is usually felt near the front of the head. The newborn skull is not one piece but actually comprised of multiple pieces of bone that allow the head to compress and expand during birth and with the growth of the brain thereafter. The “gaps” between the bones make up the soft spots or sutures.  With this being my third child and myself working in the medical field, I knew that this closing so early was not a normal finding.  The following morning I placed a call to our pediatrician and had an appointment that afternoon.  The doctor confirmed that the anterior soft spot was no longer present. There was also a mild ridge that you could feel at the back of the head, which I had mentioned at Weston’s very first appointment.  We went immediately for an x-ray.  However, that was inconclusive, so an appointment with a neurosurgeon and a 3D CAT scan was now in our near future.

The 3D scan was performed and the diagnosis was now confirmed. Weston has Sagittal Craniosynostosis.  As described on the NIH website, Craniosynostosis is classified as a birth defect. It is when one or more of the sutures on a baby’s head close earlier than expected. The skull bones typically fuse around 2 or 3 years old. My son was only 8 ½ weeks at this time.

So what does this mean for Weston? Without treatment, Weston would have an abnormal head shape. With the center suture already fused the head would appear narrow and the forehead would protrude and the back of the head would elongate.  The shape could cause discomfort when laying on his back.  Single suture craniosynostosis is typically not associated with genetic disorders. The sagittal type is considered most common occurring in about 1 out of every 1000 births.

We met with a neurosurgeon and a plastic surgeon. We were given three options for treatment. The first was to participate in a helmet only study.  This is a newer study but appeared rather successful.  Weston would be placed into a helmet for an extended period of time.  And his head shape would be the determination of how well it worked. If it was unsuccessful, a major surgery would be necessary.  The second option was a minimally invasive surgery. This option was only available because his diagnosis was made so early on. The surgery is called a strip craniectomy.  Just as it sounds, a strip of skull would be removed releasing the fused skull bones. Weston would be placed into a helmet following the surgery to help shape the skull as it grows.  The third option was to wait till about 4-6 months of age and perform an invasive surgery called a craniotomy. During this surgery, the skull bones would be removed and reshaped with plates and screws.  It was a ton of information to digest. We researched and prayed for a few days.  Our decision was made to move forward with the minimally invasive strip craniectomy.

Weston went in for surgery on May 13th. The surgery was quick. It only lasted about an hour. The doctor came out and reported to us that the surgery went well. The only issue that we had at hand was that prior to surgery, Weston’s hemoglobin level was on the lower side at 8.4gm/dL  (Normal is 11 to 15gm/dL). It was something that they would watch and reevaluate several hours after surgery. He headed on to recovery and then was finally transferred up to the PICU. We waited for what seemed like forever. Finally around 2:45 pm, I was able to walk into the PICU room and see my baby boy for the first time since I handed him over for surgery. I was taken back by the sight. He was pale and looked very tiny on the very large hospital bed. He had an IV line in each foot; an arterial line in his left wrist. He had heart monitor leads coming from his chest. He had a pulse ox attached to his right big toe.  And he had a catheter. Monitor screens reading his vitals lit up the darken room. And then I heard his cry for the first time; my heart shattered into pieces. It was the worst sounding cry I’ve ever heard come from any of my children. My tiny little baby, who could not even have Motrin, was on morphine every two hours around the clock and Tylenol every four hours.  The nurse asked me if I wanted to hold him. I was dying to hold him! I held him the rest of the day and through the night. I didn’t lay him back in his hospital bed until 4am. And I only put him down at that point to use the restroom and pump. The second day we were moved out of the ICU to a regular room.  Weston slowly started nursing again. The swelling of his head was in full effect though. His hemoglobin levels dropped lower as well.  We called for a minister of our church to come anoint Weston and pray for his recovery.  This was the hardest trial our family had ever been through.

Day three brought us smiles from Weston again. Praise God! He was back to nursing almost like normal. His swelling was gone. The only problem lingering was his hemoglobin level. It had dropped down to 4.6 gm/dL.  That afternoon we agreed to a blood transfusion.  Weston tolerated the transfusion well and we stayed a third night in the hospital.  Saturday, May 16th we finally went home.

Weston bounced back pretty quickly. His dimple smiles filled our home once again. We went four days later for his helmet fitting and finally a week later we picked it up. So here we are today, six days into the helmet with many more ahead of us.  Weston will be in a helmet 23 hours a day and anywhere from 6 to 12 plus months.  He seems to be adjusting well to it. I am not a fan. I miss the close cuddling and rubbing his hair. But I am thankful to God for pulling us through this and the medical technologies, surgeries and devices that will grant Weston a normal appearance and a brighter future.

For further information and sources see links below.


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