Meeting Micah: The Beginning of Our Journey with Craniosynostosis
We are now a family of four! Micah Carter Bailey came into the world on Thursday, November 1st at 2:56 am. He was 7 pounds, 12 ounces and 21 inches long. I was in labor about 21 hours, if you don’t count the 40+ hours of false or “pre labor” that my body thought it needed to tease us with before delivery day. Micah was comfy… What can I say? His delivery was natural and free of interventions: beautiful and redeeming after our labor experience with Juliet. Nate and I both got to pull him out into the world together and Nate cut the cord! If you’re interested in reading my whole birth story, just let me know and I’ll send it to you.
We are so in love with this sweet, cuddly, good-natured little human being, and we are in awe of God’s perfect design. His fingerprints are all over this one… From the tiny forehead wrinkles to his adorable little belly button.
Part of the reason for this post is to simply introduce this tiny wonder to you. The other is to allow you to be part of the journey we are about to embark on with Micah. On his second day of life, our pediatrician diagnosed him with Sagittal Craniosynostosis. That’s a fancy way of saying that 2 of the bones in his skull (the parietal bones on top) fused in the womb prematurely. They are supposed to remain independent of each other until he’s about two years old. Because of this fusion, his brain is being forced to grow in an unnatural way. So his little forehead and the back of his head protrude out more and his head is sort of elongated front to back.
Handling the news of Craniosynostosis
When we first got his diagnosis, I was so sad. My little boy was not even two full days old and we were being told that he would need a surgery to correct his skull. Every parent wants their children to be whole, healthy, and “normal.” Every parent wants to protect their children from pain and trouble.
The next few days, I struggled to even think about the upcoming procedure without crying. To talk about it ended in a total meltdown. I just want to hold and protect sweet Micah from everything. But I can’t. This is a road we must travel. A few days after he was born, I found myself in Psalm 139, one of my favorite chapters in the Bible. I read, “You knit me together in mother’s womb. I praise you because i am fearfully and wonderfully made… My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body.”
It confirmed for me that Micah’s condition is no accident. The God of the universe knit him together in my womb and formed his body perfectly, and according to His will. Who am I to question why he isn’t “normal?” Since then, Nate and I have had unshakeable sense of peace about Micah’s future. God will go before us and uphold our family with His righteous right hand. (That’s from Isaiah. God gave me those verses in a dream before he was born. I thought they were to take with me through the labor experience, but considering that I didn’t even think about them then, I think they were meant for this journey!)
What does this mean for Micah?
I’ve done a ton of research on Craniosynostosis since Micah’s diagnosis. The condition occurs for unknown reasons, but occurs in about every 4,000 births, according to our surgeon. It is more common in boys. When it’s diagnosed at birth, the surgery generally takes place around the 3 month mark. The surgery is called a CVR (Cranial Vault Reconstruction). The surgeon will make an incision from ear to ear across his head, remove the fused portion of bone, then remove the remaining bones in his skull and reform them, put them back in, and secure them into place with thin plates and screws that will dissolve on their own within about a year and a half. It will require a few days of stay in the ICU and about a week total at Vanderbilt Children’s Hospital.
Obviously, we would like to wave a magic wand and take this away, or be the ones in his place instead. A three month old is so tiny… so fragile. But we know Someone really strong will be guiding the surgeon’s hands and will be with him as he recovers. We are resting in this!
We’ve also realized that there are a number of things we’re thankful for:
- We have one of THE best surgeons in the nation right here just 20 minutes from our home. Dr. Kevin Kelly has been doing craniofacial procedures for more than 20 years, and performs 5 CVRs each week!
- Our insurance is supposedly going to cover 100% of this. Though a plastic surgeon is operating (with a neurosurgeon present as well), CVR is not considered a cosmetic surgery because if Craniosynostosis is left untreated, it will cause issues in the future.
- This is a treatable condition. You may know, we had a Down’s Syndrome scare around the 20 week mark during my pregnancy with Micah. I wrote about that here. While we would have welcomed Micah with any condition, we are thankful that he only has an issue involving his skull. This condition will not affect his intellect or abilities after treatment. Yay!
- Already, I’ve been connected with a great group of other moms whose kids have had Cranio surgeries with Dr. Kelly! They are so supportive and kind to answer questions that have come up in this process. I believe that some of them will likely be friends for life.
- Micah’s condition has brought our already close knit family even closer. Nate and I are learning to trust in the Lord more and we are patient and kind to each other as we process the information we’re getting. Our extended family are all praying and loving on Micah. Nate’s parents are giving him excellent chiropractic care to balance his skull and give him relief and as much space as possible to grow in the interim. We are so grateful for them.
In 6 weeks, Micah will have to be sedated (there is a chance he will not) and will get a CT scan which will give Dr. Kelly the full scope of the reconstruction that will need to be done. This may require a day’s stay at Vanderbilt if he has to be sedated. Then, we’ll schedule his surgery within a month of getting the CT scan results, when Micah is about three months old. In 98% of cases, the CVR surgery will be the only one a child ever needs, though occasionally a follow-up one is necessary if the soft spots don’t fully close up after 4 or 5 years.
After the surgery and Micah’s week long hospital stay, he should have a normal shaped head and no repercussions! He won’t need to wear a helmet, either, because the CVR (as opposed to the endoscopic surgery) reconstructs everything at once. How cool is that? Though I’m growing quite fond of his sweet little head shape, he’ll probably be rockin’ some awesome beanies and hats this winter if for no other reason than to not feel like we need to explain things to curious strangers.
How you can pray:
We know that God is the great Healer. He could choose to completely remove the need for surgery between now and his scheduled date. He will use this situation to His glory no matter what ends up being necessary for Micah. While we would love to have Micah healed, we desire first and foremost to be obedient and faithful in walking through this season trusting in God’s sovereignty and provision.
Please also pray for continued peace for our family as we approach his surgery date. I keep hearing, “This will be harder for you than it will be for him” and I believe it. Kids are so resilient and Micah will be a champ!
Surely the righteous will never be shaken; they will be remembered forever. They will have no fear of bad news; their hearts are steadfast, trusting in the Lord.
Micah holds such a special place in our hearts and his sweet spirit is already evident. We look forward to seeing what God has in store for him! Thanks for allowing me to share the first part of his story with you.