Craniosynostosis: Our Cranio Journey

My daughter was born with a craniofacial defect called Unicoronal Craniosynostosis. Basically, when babies are in the womb, their skull is made up of five separate bones that are disconnected from each other, this allows these plates of the skull to overlap each other during vaginal delivery. The plates go back into place after birth and as the child gets older, the plates begin to fuse together to create the solid skull that you and I have. But in my daughter’s case, and many other cranio babies, the two plates on the right side of her skull were already fused together while she was still in my tummy.

My daughter was born in February of 2017 and we didn’t make this discovery for several months after her birth. This was due to large amounts of swelling on her head after a long, rough delivery. She was stuck in my birthing canal for four hours while I pushed, trying to get her to crown. After all that trauma, she had significant amounts of swelling on the top of her head and on her forehead.

So, in June of 2017, we were at the pediatrician having a four month check up when I asked the doctor about something my husband pointed out to me. We used to call her peep eye because she had a tendency to hold her left eye closed and peep out of her right eye. The doctor replied at almost the same time that she was curious about a little ridge she was seeing along the right side of my daughter’s head, that seemed to come from the top of her head, down to behind her right ear. We were sent to the children’s hospital to have a CT scan done immediately. Luckily, my mom is a radiology technologist at the children’s hospital. One of my mom’s coworkers ran the scan and it was concluded that my daughter had Craniosynostosis.

We were referred to Children’s of Alabama at Birmingham. We live in Mobile, Alabama, which is one of the southernmost counties in Alabama. Our trip to Children’s at Birmingham was over four hours and over 250 miles long. My baby went through a five hour surgery and spent almost a whole week in the hospital.

That surgery was done on November 30, 2017. Today is December 20, 2017 and she still has her incision visible, with lots and lots of stitches across the top of her head in a zig zag pattern from one ear to the other. Her head was shaved for the procedure and she is still just a little peach fuzzy so everything is still very visible but she is healing very well.

Today, almost a month after the actual surgery, was probably the hardest day so far. I had some grocery shopping to do and wanted to pick up a few last minute Christmas presents for a family Christmas party this week. This was not the first time I have taken her out in public since the surgery, but it was the first time anyone has asked me about my baby’s head.

There were children who asked me, “What’s wrong with her head?” This didn’t bother me as I know children are innocent and the kid who asked me this meant no harm by it, she was just confused as I’m sure she’d never seen someone with their head sliced open and sewed up before. Especially not a little baby. I saw this as an educational opportunity. I told the little girl, in very simple terms, that my baby’s head wasn’t growing right and the doctors had to fix it. I could see the shock and embarrassment in the grandmother’s face when the little girl asked me, and the relief when I explained so calmly. I feel this was a good educational experience for the little girl because she learned something new about babies and how their heads grow. And the grandma learned that it’s okay for kids to ask these questions in some circumstances, but perhaps we should teach our children that some people may look or seem different than what we’re used to and that is not a bad thing. There are good ways to approach this and acting scared or shocked isn’t going to be the best.

Some of the adults who asked were very polite about it. They would smile and talk to her as she sat in the seat of the shopping cart, then turn to me with a mix of concern and curiosity, and ask me “Did she have surgery recently?”, or “What was her operation for?”, etc. To this, I simply explained her condition and what was done to correct it. Other adults were not so polite. Some grown adults were staring, gawking at her, asking me, “What’s wrong with her?!” To which I replied, “Nothing is wrong with her. She’s perfect.” Others just stared and followed her with their eyes like she was something strange.

There was one moment where I nearly cried, ditched my cart and dashed out to the car. I pulled myself together and braved the rest of my trip. There was one moment where I thought to myself, ‘If only she didn’t hate hats! I’d put a hat on her head so nobody could see her scar, but she always throws her hats off.’ I knew that thought was silly just as soon as it ran through my mind. Who am I to hide my daughter’s story from the world? This is not even my body and I’m wishing for ways to cover it up and keep it hidden from everyone’s eyes. I’m not ashamed of my daughter’s scar, and I’m definitely not gonna act like it! There was another moment where I thought to myself, ‘If one more person asks me about her dang head I’m gonna lose it!’ But that was never gonna happen either.

Today was a head rush of emotion. From grown people who should know better and little kids who would know better if their parents had taught them. I experienced everything from embarrassment to anger. No parent should have to feel that way in a grocery store because of people asking about and staring at their child.

My aim is to educate as many people as possible about Craniosynostosis as possible. Everyone know what Down Syndrome is, everyone knows what Alzheimer’s is, but I’m sure there was a time when knowledge about these conditions wasn’t very common. But over the years, people have been made aware and now these people are not treated unlike everyone else in the world. I hope to spread the word about Craniosynostosis in such a way that it becomes common knowledge and maybe I can save a parent in the future from the emotional whirl wind that comes with taking your post-op cranio baby in public. Because no one should have to feel that way and they can’t just hide at home for weeks or months until the hair grows back to cover the scar.

Let’s spread awareness. Let’s spread compassion. Let’s spread love.

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Advice For New and Veteran Moms

Being a first-time mommy, I realize that there is a lot for me to learn. While of course I can learn a lot from my own mom, mother in law, and other moms in my family, but it has been quite a few years since they’ve had babies and things have changed over time, so having other mom friends of my own to share their experience and advice with me has definitely come in handy since I brought my little love into this world. Here is some of the advice I have gotten so far, and some advice other first-time moms have shared that may be a blessing to someone else too.

Cloth diapers. Yes, I know that’s what your grandma used on your moms and dads, but cloth diapering has come a long way from rags and pins. Modern cloth diapers are adjustable, snap-on diapers with absorbent cloth inserts to keep your little one’s hiney dry and comfy while saving mommy and daddy lots of money on disposable diapers. Just like the cloth diapers of old, just wash them and reuse again and again, even if you have another baby in a few years, you can use the same diapers on them, instead of buying all disposable diapers again.

Nap time for baby is nap time for mommy. I know that it seems like the only time you can get anything done around the house is when your baby is sleeping, but what good are you gonna do if you’re too tired to function and you accidentally start pouring coffee into the dog’s bowl and pour milk over a bowl of dog food because you mistook it for cereal? Mommies need sleep just as much as the next person, we just have different schedules on which we get it. So, snuggle up with that little munchkin and get you some rest! You’re gonna need it come dinner time, Lord knows.

No screaming over spilled milk. As your kids get older, you’ll come to realize that making messes and tearing things up is pretty much hardwired in their DNA. They’re going to make plenty of messes and break all kinds of things, they’re gonna break things you didn’t even know they could break. Just roll with it and use it as an opportunity to teach them. Maybe today’s lesson will be that cereal goes in bowls, not on a plate, or hold our cups with two hands. When they’re old enough, you can start teaching them to clean up their messes behind themselves. Granted, they may not get it all up, or they might just wipe their crumbs off the counter right into the floor, but at least their showing initiative and trying to help. That’s a big sign of maturity and responsibility. Help them, guide them, teach them, but don’t go yelling and screaming over tiny messes that can easily be cleaned up.

Not all advice is good advice. Everyone and their momma (literally) is going to be giving you advice and telling you all sorts of things that you should and should not be doing with and to your baby. Not all of their advice is going to be what’s right for you and your child. All of us women are pre-programmed with mother’s intuition on our factory hard drives. There will be times when someone is going to give you a piece of advice about the mothering of your baby and you are going to know in your heart and in your gut that it’s just not right, politely decline, disagree, or just smile and thank them for their suggestion, but you will know for a fact that is not something you should do. Always listen to your gut!

Photo ops are everything. Many moms feel like they’re constantly shoving cameras in everyone’s faces, do it anyway. You’re gonna want to remember all these little things because they’re not going to last forever. So take lots of pictures and have them printed to make albums, record videos and save them to a USB so your kids can watch them later down the road and reminisce on that little girl who used to live next door that always wore piggy tails and had that snaggle tooth, or the time they fell off their bike and thought it was the end of the world until daddy scooped them up and told them never to give up on themselves, or just those dress up tea parties that seemed to happen a lot more than occasionally. Whatever it is that makes your heart happy now, record it for the years to come. You’ll thank yourself.

Water and sunlight isn’t just for plants. A little H2O and some vitamin D can make a world of difference in both mom and baby. Health and mood benefits are definite pluses in my book! So, take that precious little human out in the stroller for a quick walk. I know it may seem like there’s no time, but I assure you the dishes can wait another thirty minutes. Grab a bottle of water for you, a bottle of milk for baby and go walk the neighborhood. It will make you feel a ton better, it’s good for baby’s immune system, and what a simple way to burn some calories and lose a little of that baby weight!

Don’t blink. It may be clich√© but trust me. One day you’re going to be out shopping and see a child younger than your own and you’re going to look at them and say, “I remember when you were that little! What happened to my tiny baby!” Every stage they go through, every milestone and achievement is worth remembering, so take your time with them and really enjoy every moment.

We may be super hero moms, but we are still human, and humans make mistakes. Not everything you do or say is going to be right. Don’t spend too much time dwelling on something you can’t take back or change. Learn from your mistake, apologize or talk it out, and move on knowing that not everyone is perfect and you’re still learning just like your little one.

Sometimes babies just feel like crying. There are lots of moms who don’t pick their babies up every time they cry, and that’s okay. There will be times when their butts are clean, bellies are full, they’ve been burped and there’s nothing they could possibly be crying for. They’re just having a fuss. You don’t know why, they don’t know why, but stressing yourself out trying to calm them is just going to make it worse. Your baby can feel your emotions, your stress and your anxiety. If you’re frantically patting them and doing the freaked out “it’s okay, it’s okay!” they’re just going to freak out even more because they know mommy’s freaked out and that’s not cool! You can always put on some soft music and rub their little heads and talk to them gently to calm them, or just let them get it all out. Either way, you’re not a bad mom for letting your baby cry. I repeat, you are NOT a bad mom for letting your baby cry under these circumstances. The more you hold them and freak out with your frantic, anxious, mental and emotional overload, the more likely you are to hurt your baby and that’s definitely not good.

In all, don’t be afraid to ask for help. Nobody hands you a How-To Manual at the hospital when you have a baby and there is no real set of rules to follow, so if you need help, ask someone (Google and Siri included) for advice. Remember the smile and nod approach to the advice you feel doesn’t resonate with you personally, but don’t be afraid to ask for help when you need it. We all need a new perspective¬†every now and then.

If you have any advice of your own to share, feel free to do so in the comments! I know there is lots of advice waiting to be shared from one mom to the next. Let me know if any of this advice helped you and if you need more, you know where to find me!