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OPINION: Craniosynostosis. If you’re like me, it’s probably not something you’ve come across before, let alone know how to pronounce it.
That was until February of this year when our little girl was born with a prominent bump on the back of her head. I felt it the day he was born, and from the moment I felt it, it did not sit well with me.
I reassured myself with thoughts like “many babies have unusual shaped heads when they are born, it will disappear over time” and “you are probably just being a paranoid mom for the first time, nothing to worry about” but I couldn’t let it go.
As the weeks passed and our perfect little bundle grew, we began to notice some asymmetry on her face. We were in the middle of the coronavirus level 4 lockdown, so I did what everyone tells you not to; I went down the Google wormhole. This is where I first came across craniosynostosis.
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Craniosynostosis is the premature fusion of the skull plates on the head of a baby. About one in 2,500 babies will be born with this condition each year.
There are several different types of craniosynostosis. I researched far and wide, looking at photographs of children diagnosed with this condition. Non-syndromic lambdoid synostosis, the rarest form of craniosynostosis, stood out. The subtle similarities to our daughter were undeniable.
Once again, my self-preservation instinct kicked in: “surely our daughter couldn’t have something so weird” and “Google always gives you the worst case scenario.”
I had to stop once I started delving into the possible side effects and treatments for the condition; it was too much to bear and we had to speak to a professional.
Our daughter was due to receive her six week vaccinations. When the doctor asked if we had any concerns about how our daughter was progressing, we proudly shared how happy and healthy she was, meeting her milestones; surely there could be nothing wrong.
UNSPLASH
“It’s funny how all the things that you think will become your concerns as a new parent suddenly become irrelevant.”
Then we calmly turned his attention to the ridge on the back of our daughter’s head, hoping to be sure there was nothing to worry about. However, we were referred to a pediatric neurosurgeon, who later confirmed that it was a probable case of non-syndromic lambdoid synostosis and that our then 3-month-old daughter would probably need to undergo surgery.
It’s funny how all the things that you think will become your concerns as a new parent suddenly become irrelevant. Our fears of how we might overcome the four-month sleep regression were quickly replaced by an impending operation to reshape our daughter’s skull.
This was quickly followed by mom’s fault: what has caused this? Is it something I did during my pregnancy? Was it something I ate? All the doctors you ask tell you that it is not your fault, it is often completely random, but you can’t help but feel a sense of responsibility.
It felt big and scary and lonely to be diagnosed with something most people knew little about.
I turned to Doctor Google looking for similar cases in New Zealand, somewhere where I could talk to other parents who had been on this trip and passed the other side.
I found a Facebook page on craniosynostosis in New Zealand that contained an army of mothers, fathers, grandfathers, and a diverse support team. They had all experienced slightly different journeys, but were ready and willing to share their experiences and offer support in any way they could. He no longer felt so alone.
Surgery for craniosynostosis can only be performed in two locations in New Zealand: Auckland and Wellington. This meant that we would have to step away from our support networks to undertake our biggest challenge in parenting yet.
We had heard extraordinary things from the Craniosynostosis group on Facebook about the surgical team that would be taking care of our daughter, and even in our first meeting with them they exceeded all expectations. We couldn’t believe how lucky we were to have such talented medical professionals right here in New Zealand.
While they identified with our concerns as anxious parents, they also gave us full confidence in their ability to solve our problems. It didn’t feel so scary anymore.
Six weeks ago, our 5-month-old daughter underwent a skull vault reshaping operation. It was big, it was scary and it was really very difficult to watch our precious baby go through such an incredible challenge when she was so little.
What overcame the stress and fear we experienced during this time was seeing our strong and brave little girl being so resilient and recovering faster than we could have imagined. We were absolutely in awe of her strength and courage, and within weeks, she was happy and cheeky again.
UNSPLASH
“Six weeks ago, our 5-month-old daughter had a skull vault reshaping operation.” (File photo)
We have been grateful for many things throughout this journey: every medical professional we have dealt with, the staff at Ronald McDonald House, the skull moms and dads who answered our endless questions, and most importantly, the family and friends who have helped us. this time.
We have also learned a lot. We have learned that we are very lucky and that there are many people who face challenges far greater than ours. We have learned that Google is sometimes right and that it is very important to trust your instincts. We learned to be braver than we thought we could be.
September is Craniosynostosis Awareness Month. I’m writing this because I know that one day soon there will be another mom or dad who will notice something with their baby’s skull that doesn’t suit them and they too are going to fall down Google’s wormhole.
Most likely it is nothing, but if it turns out to be something, I want them to be able to read something hopeful, to know where they can get support, and to know that they are not alone.
If you’ve recently become a skull mom or dad, I want you to know this: your perfect little baby is exactly that, and you’re going to get through this. I looked for help.
Let’s make craniosynostosis a little less unfamiliar and a little less scary.
