Holding your child for the very first time, meeting the new little individual you’ve been dreaming of for months (or even years) is nothing less than amazing.
But what about when you realize that this little person has an unexpected “imperfection”?
Our son was born with a bump. The best way to describe Ethan’s bump is this… it was as if I were holding an apple under a baby’s head. It was plain to see that his head was not normal. And in our case, Ethan’s bump never went away.
I’ve joked since our oldest child was born, that no instruction manual came with him. Who took my instruction manual?! But we know that when a child is born, so is a mother’s intuition. Mine told me that something was wrong with Ethan’s head… although no one had said anything.
None of the doctors at the hospital mentioned anything about this baby’s head. None of the nurses. Not even the pediatrician who conducted Ethan’s one week appointment. No one told us the bump would go down, that it was just from his little head getting squeezed during childbirth. No one suggested that we keep an eye on it. Nothing. Crickets.
Two weeks after Ethan’s birth the bump was still there and the fear in my heart started to rear its ugly head. I brought up my concern about “the bump” to a couple girlfriends who suggested I take Ethan to the doctor and have it looked at.
It took me two more weeks to gain the courage to make the call to the pediatrician. I described Ethan’s abnormally shaped head. I told them how I couldn’t easily find his soft spot and that there was a ridge on the top of his head. I made an appointment. And then I laid down on the sofa with Ethan on my chest and just cried, and cried, and prayed, and cried. I had an idea of what the diagnosis would be and I was scared.
The pediatrician seemed surprised by the bump. “Was he born breach?”
“No, he was a regular delivery.”
“Are you sure?”
The pediatrician had taken no head measurements at Ethan’s 1-week appointment and made no notes about the shape… and he seemed baffled he hadn’t done these things. He wrote us up stat requests for an ultrasound and X-rays which led to stat requests of a CT scan.
The results concluded Ethan’s brain didn’t show any abnormalities, but we were recommended to a Children’s Hospital and a week later came home with the diagnosis we were expecting… Craniosynostosis.
Craniosynostosis is a birth defect that causes one or more sutures on a baby’s head to close earlier than normal.
The skull of an infant or young child is made up of bony plates that allow for growth of the skull. The borders at which these plates intersect are called sutures or suture lines. The sutures between these bony plates normally close by the time the child is 2 or 3 years old.
Early closing of a suture causes the baby to have an abnormally shaped head. Sagittal synostosis, where the premature fusion of the suture at the top of the head (sagittal suture), forces the head to grow long and narrow, rather than wide. If untreated, the baby may develop increased pressure inside the skull (intracranial pressure) which can cause blindness, seizures, brain damage, death, permanent head deformity, and problems with speech & language development.
Surgery was our only option. The surgery meant removing Ethan’s skull from crown to forehead so his brain could round out. The plates of the skull were cut apart and with the use of plastic plates and screws pieced back together to reshape the head.
This surgery, we found out afterwards, is one of the hardest for a baby to undergo.
Babies must be 3 months old before they undergo the surgery to build up enough blood supply. So we had 2 months of waiting.
Waiting… this was the worst part of our journey for me.
I was a wreck of emotions. I was angry at the pediatrician for not catching Ethan’s head. What would’ve happened if I hadn’t brought it up to him?
I was nervous (okay, scared) about the upcoming surgery.
I was trying to trust with my whole being that all would be well, but my heart was heavy for what was to come. There were so many questions, so many “what-if”s to think of.
What if the surgery changes his sweet nature?
What if he doesn’t look like himself anymore?
Will I be strong enough to handle this well?
What if the surgery isn’t successful and they need to redo it?
What if he doesn’t survive the surgery? Our families haven’t even met him yet!
Those two months of waiting felt like such a fog to me. One minute I would be happily playing with my boys and the next minute I was in tears thinking about Ethan.
We rushed to visit both sides of our families and throw a “Meet Ethan” gathering with friends and extended family. And we waited.
I felt like the upcoming surgery ruled my mind. Praying was the only thing that gave me peace until my control freak nature started to kick in again.
Funny thing is, I look back now (2 years later with a healthy, happy child) and I realize I behaved exactly as expected. All of these feelings, all of these powerful emotions that made me feel half-crazy were completely natural.
It means I loved.
Moms, don’t be afraid to love your child. Love them so much that you choose to do what’s best for them even when it hurts.
There will always be challenges in this life, obstacles to overcome, heart aches to face. Whether it’s a health concern or issues at school… no one will ever love your child as much as you do. You were chosen to be your child’s mother for a reason. Love them, dearly.
Want to read our complete journey of Ethan’s head surgery and Craniosynostosis? Here is it… from diagnosis to one year post surgery this challenging time is written as a story of thankfulness and praise.
Our Journey of Ethan’s Head Surgery… Craniosynostosis (the diagnosis)
Our Journey of Ethan’s Head Surgery… Craniosynostosis: How We Prepared
Our Journey of Ethan’s Head Surgery… Craniosynostosis: Sunday Night
Our Journey of Ethan’s Head Surgery… Craniosynostosis: Monday
Our Journey of Ethan’s Head Surgery… Craniosynostosis: Tuesday
Our Journey of Ethan’s Head Surgery… Craniosynostosis: Wednesday
Our Journey of Ethan’s Head Surgery… Craniosynostosis: Thursday
Our Journey of Ethan’s Head Surgery… Craniosynostosis: Friday & Forever Grateful
Flashbacks of Hard Hospital Memories
Alisha is the mom of three boys, wife, and a DIY project addict. When she’s not playing queen of the castle, she is often having playdates with friends, dance parties in the grocery store, or enjoying a large glass of wine or a margarita with her hubby! Alisha blogs at Makeovers & Motherhood where she finds ways to “makeover” the challenging parts of life and make them into something beautiful. Here you’ll find everything from quick healthy recipes, ideas to organize the home, ways to be more hands-on with kids, or parenting tips & stories. Read more at Makeovers & Motherhood or find her on Facebook.
A Mother’s Grief