Craniosynostosis: What it was like having your firstborn infant son go through reconstructive skull surgery.
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Craniosynostosis. Like how do you even say it, never mind tell other people about it? Even for a month or more after it happened my husband and I still felt like it wasn’t real. It was like a devastating car wreck. You spent so much time trying to wrap your head around what just happened. When the time came to talk about it you remembered it as an out-of-body experience.
My son. Oh man I love him.
He’s quirky and silly and oh so loving it breaks your heart. He will just walk right up to you to give you a hug and a kiss and go back to his books. He’s a book lover, every single day we read books, morning, noon, and night. He hates the word ‘no’. While he may only be a year and a few weeks. But he knows what ‘no’ means and he’ll make a face at you and stamp his feet. He’s skinny but he eats like a machine. He can hold his bottle. Except he prefers when I do so he can play with my hair while he drinks. He’s shy at first but he warms up, just be gentle with him.
Stubborn from the day he was born.
He put me through a 21 plus hour labor. It might’ve been as long as 48 hours. But definitely from broken water to a baby in my arms, it was just under a full day. My water broke on my due date, 5 am on a Friday exactly what my husband wanted. He was getting ready for work but he wasn’t out of the door yet.
I called the doctor to let him know. Adam took the garbage out. I did the dishes. We did a double check of our list of essentials and we headed to the hospital. Knowing it was probably going to be a while. We’re not really the panicking type. While we knew it would be a while before he was in our arms. But we were that scared/excited where, again, it didn’t exactly feel real. Only we knew babies eventually come out in the real world to become little humans.
2:27AM 7lbs. 4oz. 20in. Hunter joined us and he was just what I thought he’d be from the start.
They threw him on my chest and within a minute or two, his wailing quieted down. He was just checking us and the world out as any good curious boy would. He got a perfect APGAR. At first, he had trouble latching so he got a little jaundiced. Once we gave him some formula he got right back to normal. 10 days later after his initial tests came back our doctor called us in a panic. She told us to go to the hospital right now, do not stop, this is life or death.
Only that was just a doctor error. So we were sent in a panic to the hospital to spend 10 hours there for better-safe-than-sorry. We breathed our sigh of relief and continued to live our new normal.
Being a mom was awesome.
I was on extended leave to take care of our baby. When the time came for me to go back my husband left his job to stay home with our son. It made the most financial sense at the time. Meanwhile, he finally latched around month 3. So I pumped at work and during my pump breaks, I often fought with insurance to get my son coverage. We got married, we got pregnant again, I got laid off. 6 months I fought with insurance. 6 months, I went back to work and was already laid off and he still had no insurance. Still no idea that craniosynostosis was a thing.
Every week I was on the phone, begging, pleading, screaming. We need our infant son to be covered so he could catch up on his shots. They still owe us for the out-of-pocket doctor visits while we fought with them. Finally, we bring him in September when he’s 7 months old. Four months without seeing a doctor. Our third doctor due to crazy ‘life-or-death’ first doctor. My insurance was the second doctor. And finally soon-to-be-insured baby doctor #3.
Immediately the doctor wants us to go to the hospital to get our son looked at by a professional. Except the hospital won’t take us without insurance. So finally, finally in October (after I absolutely lost my mind on a poor health insurance representative). We get coverage and we can take him to the specialist. Should’ve lost my temper sooner in hindsight but I don’t like to be mean.
Craniosynostosis, we googled it left and right, backward and forwards, skull surgery was the bottom line.
Skull surgery. On my little baby. My 8-month-old son at the time with his little funny shaped head. I loved his funny shaped head! It was a long labor. I figured it was just going to continue to change and get more normal, my baby’s funny long head. He was normal though! The only thing he ‘couldn’t’ do was sit up. I was like well, yea, he’s got kind of a funny head, I’d have some trouble sitting up too. There was nothing ‘wrong’ with him!
There was the possibility of a helmet, we prayed so hard for that helmet! We could put cute stickers on it, he could be a football player! Every day could be like Halloween with our funny-shaped-head baby and his helmet, I was sold. On Halloween though we got the news that it was not going to be sticker-helmets for our son though. It was skull surgery. They said it was craniosynostosis.
Craniosynostosis is a condition that really has no ‘reason’ for happening.
Online you’ll see speculation that it’s hereditary, it’s because of my thyroid, it’s completely random. It’s where the baby’s skull fuses too early, not allowing the brain to grow and change. Most babies ‘ skulls allow for their soft spots. It could have zero long-term issues (other than a funny head). Secondly, it could lead to developmental delays, issues with walking, and talking. Finally, the fusion of the skull for our son was the most common. It was along the sagittal ridge. That is the lengthwise from the forehead to the back of his head. It’s why my baby had such a long head. It occurs in approximately 1 in 2,000 babies, all of this according to our doctors.
But my babies hair!
He had such long pretty hair and it was a little gingery like my husband’s beard. Kind of like my Irish ancestors and family members. I always wanted a little ginger (my very ginger uncle disagreed). That’s what I fixated on, his hair. I didn’t want them to shave his head! I wanted to keep my funny shaped head baby with his ginger hair completely intact and untouched by surgeons. We knew there really wasn’t another option. We had about a month from diagnosis to surgery to prepare. The surgery was on December 2nd, 2019, right before my baby’s first Christmas. I was so sad he would be all ‘damaged’ for his first Christmas. I didn’t get pictures with Santa because everything was so crazy. Also, I didn’t want a funny headed picture. Any more than I wanted a bruised face and scarred head Santa picture.
We told our families and we were always so utterly calm. I don’t think even they were as freaked out as they should’ve been. We purposely downplayed the reality of it just as the doctors had done to us. To save us all from absolutely losing it. In reality, surgery on any infant is scary. With no idea of how anesthesia will go alone, we could’ve lost our son right then and there. Craniosynostosis is skull surgery.
My husband donated blood.
I couldn’t because I was 5 months pregnant at the time. We were happy when we found out he and our son were a match. That way at least daddy could be there in the operating room with him in a way. On the day of the craniosynostosis surgery, they were calling for snow. We got there on time by some miracle. We had a whole suitcase packed. Because even if they said a week we’d be there we didn’t know for sure. And I like to be prepared for anything. Craniosynostosis surgery sounded serious. I was not going to leave my son’s side come hell or high water.
The doctor called us from the nurse’s station while we were in the pre-surgery room. She asked if we could possibly reschedule. Because they were calling for a few inches of snow and she lived an hour away.
I immediately started to cry and handed my husband the phone. She wanted to reschedule. Like there was a better time to cut my baby’s head open and saw his skull off than that day. We were already in the hospital waiting for her. Craniosynostosis surgery saved for another day. My husband said no way, but I’ll never forget the nurses looking at me, I had finally broken. I was crying for the first time about my son’s craniosynostosis surgery in front of a room of strangers. Because it was a minor inconvenience for the doctor to make it that day. Now the doctor did a fine job, but the plastic surgeon has a much better bedside manner, I’ll say that.
The surgery was supposed to start at 7 AM.
Since there was a possibility of snow now we had a whole extra hour plus to sit and wait. Do you know what it’s like to wait in a little cubicle with your tired cranky baby? Who got woken up to go get his head cut open? And field questions from the millions of faces that inevitably float in and out?
Signing papers, getting more blood drawn out of my baby’s tiny little arm. Being told the risks and side effects of the anesthesia and what to expect post-op. My baby wasn’t allowed to eat or drink anything for hours. He was rudely woken up, and they’re drawing even more blood from him. But they were calling for an inch of snow!
The time came for craniosynostosis surgery and they gave my baby loopy medicine. So that he’d be more willing to go instead of needing to pry him away from me.
Oh man, I really lost it then. They were taking my baby and I didn’t know if I’d ever see his laughing little face again. I didn’t know if I’d get to feel his little baby arms hug me again. I ugly cried for about 5 minutes in that little cubicle. Clutching my husband as tight as possible when they took my son away. He clung to me just as tightly but he was my rock. I’ll never be able to thank him enough for that. We took a collective deep breath and headed back upstairs to wait.
I’d done my Christmas shopping on Amazon, it was Cyber Monday.
Sitting in the waiting room I posted in my private Direct Sales company Facebook Group advertising Cyber Monday. I received and processed orders and said thank you. I stayed in that headspace of ‘this isn’t real’ even while we checked the TV. The TV updated us on the status of his surgery. He was just a bunch of numbers with different symbols for what was happening.
We drank too much coffee. We didn’t eat anything. I went through hundreds of emails. We showed each other interesting things on our phones. When we got visited by his plastic surgeon his calm demeanor and easy smile made us feel relaxed. We got visited by the head nurse, Joan, who shares my grandmother’s name. Joan is so super sweet and loving. Calling our son ‘pookelah’, giving my husband and me warm hugs that you feel with your soul. If ever there were angels on earth, they might just be named ‘Joan’.
Joan informed us that they had difficulties in the beginning but that all was going well.
Difficulties. What kind of difficulties? This is craniosynostosis surgery. Was my baby sad and scared and crying for his mama? Was he being silly because of that medicine? And the doctors just thought he was so cute they wanted to play with him for a while? I pray for the second.
Even now tears are streaming down my face because the reality is they took my little baby away from me. Then they cut his head open, sawed his skull off. Stuck IVs in his arms and a tube down his throat. Worst of all, I wasn’t there to soothe him and save him from all those scary doctors.
Oh, but my baby is a trooper.
Hours later, a few longer than they had promised they brought my husband and me down to the post-anesthesia room. With all bags in tow, to sit and wait even longer before we got called back. Craniosynostosis surgery is pretty involved. We didn’t recognize him. That moment I’ll never in a million years forget. We both looked at our son and looked around thinking, ‘that’s not our baby’. His little angel face was swollen already to twice the normal size. With white bandages covering his entire head, in a yellow hospital gown with tigers on it.
When we got closer I could hear his little raspy voice crying. The tubes had hurt his throat, but he couldn’t open his eyes to see me. I would’ve died right there to spare him another second of torture. The nurse told me I could hold him and I jumped at the chance. My little trooper settled immediately like when they first plopped him onto my chest. He settled into mama knowing I’d keep him safe. I was allowed to give him Pedialyte out of a bottle and he started chugging. Finally, my heart began to settle.
They wheeled me and my little man right up to the NICU where he stayed safe in my arms.
Making little mewling noises. There were IV’s in both arms. One in his leg in the artery. He had a ‘twinkle toe’ where they monitored his blood pressure. We were so far from out of the woods.
Over the next 24 hours, he chugged a whole bottle of Pedialyte. Only to throw it all back up. We had a painstakingly careful sponge bath to tackle with the nurse as a result. For the next 72 hours, his temperature was high. They gave him Tylenol around the clock, they said that was partially due to the blood transfusions. His head swelled impossibly, at least 4 times its normal size. Maxing out around honeydew melon size, not quite watermelon yet. His pale skin was mottled everywhere. Both eyes were completely swollen shut and black and blue. He had swelling in his mouth the size of a grape so he had trouble drinking his bottle still. His drinking slowed down and we got nervous.
In the beginning, I stood on a stool next to his bed the entire time. With my head on his little belly very gently so he could play with my hair and feel like mama was holding him.
I only left to use the bathroom and only then usually when he was sleeping. I was 5 months pregnant at the time so that was a feat. When they let me hold him I was so afraid of hurting him I didn’t move more than necessary. He’d had craniosynostosis surgery, his skull was sawed off. He was in pain but he was happiest with mama holding him. He was still flirting with the nurses though, waving at Joan when she’d come to visit.
There was no bed in the NICU for my husband and me. The chairs reclined very far so we would get some sleep. In between Tylenol, vital signs, IV checks, and when Hunter was actually sleeping. Some of the nurses were nice. Some were too chipper and would wake him when they came in. Annoying us both with their chirpy voices and their upbeat personalities. We were feeling far from upbeat.
Joan said his vitals were looking promising sometime during the second day and would we like to be moved to the pediatric unit?
I couldn’t believe it, his head was still so swollen! He was still in pain and so bandaged, but he’s ok, you’re sure? I wasn’t sold. We weren’t promised our own room either and my brain immediately imagined a crying little baby keeping my little baby up all night when they both would need their rest, but we couldn’t stay in the NICU the entire stay. Joan hooked us up though, she managed to get us our own room and a bed for me so I could be a little more comfortable with my big old belly.
A bathroom in the room was the highlight. In the NICU we had to leave the wing to go to the bathroom and get buzzed back in. We both took showers and it was the first time I felt mildly human since before we even got to the hospital. There were more doctors and nurses than ever before, some looking frazzled and haggard and some that, again, would throw open the door like Snow White singing to the forest animals and wake my poor baby abruptly.
Being one in 2,000 for children with craniosynostosis he was presented to everyone that would need to know how to handle cases like his in the future.
Aspiring nurses and doctors, neurosurgeon specialists, and plastic surgeons alike. Some were kind enough to be quiet so as to not disturb him and us, some said they would come back if he was sleeping, some would just start poking and prodding.
He would drink so well we slowed down his IV, only for him to stop drinking again and we upped it again. We had to give him morphine after they took the bandage off his head. He was so miserable and there was no amount of mama snuggles that would soothe him and the more he squirmed in my arms the more I feared that he would hurt himself. With his back bowed, he was kicking, and he still couldn’t open his eyes. His cut was from ear to ear, zig-zagged over the top of his head in big slices, his hair was matted with blood that wouldn’t come out for months. His ginger hair, they only shaved off what they had to, it’s still in a bag with a biohazard symbol on it.
After that last round of morphine though, my little man started really pulling through.
His eyes started to open in little slits. He wasn’t just waving at nurses but babbling and kicking his little feet. We were able to order meals for me because I was nursing him still (even though I mostly pumped instead and gave it to him in a bottle for fear of hurting him). We ordered applesauce for him and bananas, his favorite, and he started eating! Once we could feed him real food, he didn’t want to stop, like my ‘real’ baby again. Not just my poor craniosynostosis baby.
Daddy picked him up to hand to mama (his head was still so swollen and heavy it was difficult for me to maneuver) but he clung to daddy.
I think that’s when we all breathed a sigh of relief. My husband, with tears in his eyes, was finally holding his baby, who was happily munching on puffs and flipping the pages for daddy to read to him. We knew he was going to be fine then. He didn’t need his mama anymore, he just wanted to be out of that hospital bed.
They took out some of his IVs but left some in his hands in case they needed access to them and they let us go to the play place at the end of the hall! My little Connor McGregor, with his cauliflower ears, double black eyes, and ginger hair. He looked like he’d gone a few rounds in the ring but he could finally almost open both eyes and the swelling was down by half as he crawled around that room and gave us toys to play with him and books to read to him. My husband’s favorite picture is Hunter standing at the little kid table looking at the camera with his swollen face and black eyes, he was so happy finally. No longer in pain, not bored out of his mind, we were almost through it!
We were significantly worse for wear. Craniosynostosis will do that.
To know we were at the finish line was surreal. Days of hospital food, sleeping on hard mattresses and pull out chairs, doctors, and nurses 24/7, there was really no beginning and end to the days we spent in the hospital. That last night was the worst too I remember. Hunter was miserable, he was uncomfortable, confused, and bored, nothing would appease him. I remember we’d finally, finally gotten him down for the night around 3 am and each gotten into our respective sleeping spots when the vitals nurse came in. She woke him back up instantly.
I was spitting mad. I stormed down the hallway to keep from cursing her out, or worse crying like a lunatic, to go hide in the pantry where they kept snacks and drinks. It wasn’t the nurse’s fault, God love them at that hospital they’re truly a top-notch facility, but I was done. My nerves were so frayed, it was like now that he finally was on the mend I was falling apart. I’d kept it together until that moment and when I returned I pulled myself together again and soothed my baby while my husband took his break.
There really wasn’t a break other than to get coffee or go to the bathroom.
How can you leave your baby? It was like your whole energy was vibrating anxiously constantly and you didn’t even realize it until you walked away for a second. But you could only go so far, for baby needed us. The pantry was the lifeline when your ship was sinking, and it was 50 feet away.
When Joan had reassured us that he would bounce back faster than we thought, she wasn’t wrong. By day 4 most of the swelling was completely gone, he was eating and drinking like a champ, the worst was constipation from the drugs. Earlier in the day, they mentioned he may be able to go home and though optimistic, we were completely unsure about it. It was craniosynostosis surgery, skull surgery. We’d have to clean his scar all by ourselves, change his clothes and his diapers. He was walking, what if he bumped his head!? They reassured us left and right that he would be okay but I didn’t care, I wouldn’t have my safety net anymore and I didn’t know how to handle it.
They released us that night, almost rush hour traffic time.
I remember leaving again in a daze. My son had his big craniosynostosis head sawed open and we’re going home already. Our giant suitcase so ridiculous, but being prepared with clothes was what I could control, like his hair. It was December, right before Christmas, in New Jersey, leaving New Brunswick. I think the snow that the neurosurgeon was so worried about was still in little sludge piles on the roadway. The congestion on the roadway made me want to scream. My husband drove while I rode in the back with our baby and I was glaring at other cars that got too close to us for fear they’d hurt my precious baby even more. If we had gotten into a fender bender I might’ve been locked up for psychiatric evaluation.
We got home safe though, to our nice ‘clean’ apartment. I’d cleaned it but leaving at 5 am to go let someone cut your kid’s head open means there were all sorts of flotsam strewn about in my frenzy to not forget anything and subsequently deem it unnecessary. My husband will tell you that’s just how I am, but I think he’s a little too organized anyway. We ate lasagna my mother-in-law had made and that I had frozen so that we’d have a meal when we got home, thanks, Nana.
But we had to clean his head. His no longer craniosynostosis head.
Oh my. I was shaking and almost crying I didn’t want to do it. What if I hurt him? I didn’t, it was fine, but the blood wouldn’t come out. Days later when we could wash his head, the blood wouldn’t come out. Months went by and there was blood caked into his skin, not for lack of cleaning and applying the ointment, but it was in the soft spot they had created. I could see my son’s pulse in that spot and I couldn’t scrub his brain. It’s still there and it’s been 3 months, it will be there for a long time, that’s the point. The bruises on his hands, arms, legs from the IV’s and the bruises on his face were mottled and made my heart sink to look at them.
That first night he was crying.
I don’t even remember how bad it was but I remember freaking out. We forgot to pick up the drugs they prescribed in case he was inconsolable, we had gone back and forth but on the way out of the hospital we passed right by the drug store and it never clicked. But my husband and I are in recovery and it felt wrong. It felt wrong to have such easy access to serious drugs for our son when we were so vulnerable.
We’re three years sober but the fear was there, it was palpable. And my son seemed so fine in the hospital that whole last day, that was also why we had forgone it, he would be on a strict Tylenol regimen the first few days anyway. I went straight to pick up the prescription when I panicked, only the store was just closing and wouldn’t help me. I said ok, it’s a sign then. Only the next day he was crying again. I went straight back, they didn’t have it, I went to another and they didn’t either. He wasn’t inconsolable, but I was afraid to not have it in case we needed it, but we agreed if he were inconsolable, we would just go back to the hospital.
We had a strict no visitors policy in the hospital. Craniosynostosis felt super serious.
We updated the family as we could but in between doctors and nurses and feeding baby and ourselves we just didn’t want to add to the stress on our family. When we were finally home we allowed the family to come and that was…something. I knew what he looked like. I knew what he’d been through.
But to see the shock register on the faces of our loved ones as they took in my little man, who looked lightyears better than he did, broke my heart all over again. It was why I didn’t tell anyone about the surgery other than those who strictly needed to know. For some reason, I couldn’t bear to see the looks on my friend’s and other relatives’ faces that saw my baby looking so beaten up and scarred. It wasn’t even until after Christmas that I told the other people close to me about it. I think I didn’t want to burden them with my news, make them think of me on Christmas with my battered little boy. I wanted them to think of us joyous on our first Christmas, baby intact and whole.
See there’s a stigma when your child needs any type of surgery, at least I feel that way. And this was craniosynostosis.
I didn’t make a perfect baby. He was broken from the start. It’s that same feeling when you’re pregnant and they ask you if you’d like to test for the different disabilities and etc. that you can test for nowadays. We had declined because we would love our child no matter which way he wanted to come out and be a part of this world, and I stand by that (the difference being if it is something that is a threat to yours or your baby’s life). But, no, our baby came out so perfect. Only he wasn’t, he is, but he had to be fixed…? It’s a weird feeling. It’s a weird explanation. There isn’t really a way to describe what it really is. While I don’t think any differently about my little boy, but I think you do.
When we went out in public I hid his scar because I didn’t want the stares, I didn’t want the questions. How do you explain craniosynostosis?
I just wanted them to see his perfect little face. He’s got mama’s long eyelashes and daddy’s blue eyes and they’re just oh so sweet and adorable they make you melt. He’s got a butt chin, from where I don’t know. Big chubby cheeks from mama even though he’s a skinny chicken like his dad. But the scar.
It was mean and red, uncovered by hair even still. It’s less noticeable now but especially in the beginning, there were huge ridges on each side of the top of his head where they had screwed a bridge into his skull to hold it apart and keep it from closing again. They cut lengthwise with slits on each side of his skull and inserted a bridge and screws to hold it all in place, all dissolvable, to maintain that his brain had room to grow. It was pointy and obnoxious in those two spots, all along where there was just a dusting of hair surrounded by normal hair, with the red angry scar that still scabs even now.
My daughter shouldn’t have it. Shouldn’t. If she does, God willing we’ll get insurance sooner than we did with him, but they prefer to do the surgery at a much younger age. A 3-month-old baby having skull surgery? If I thought it was tough with my 9-month-old, I can’t imagine a 3-month-old. A 3-month-old with craniosynostosis surgery! At least my son could ‘communicate’ with me. At least I understood his wants and needs fairly clearly and he still slept a ton. I don’t want to do it again.
Until the age of 21, if my son has developmental delays, we’ll get government assistance because it’s a rare condition.
We have people assigned to our case if ever in the next 20 years our son needs extra help. Craniosynostosis requires years of checking up. Now we go to the neurosurgeon and the plastic surgeon on alternating months, the pediatrician as needed. We’ll see the specialists well into his childhood. My son still isn’t caught up on his shots because of the schedule they have to be on but at least he’s on track.
I’ll never forget the first time we went back to the pediatrician we didn’t see our usual doctor that pointed out the problem because apparently, he’s only there on Mondays. I was pissed to start because I think that’s incredibly stupid, but we had just seen the plastic surgeon the day before so I wasn’t worried. The woman doctor tells us he has an ear infection and his scar is infected. We just scoffed because we knew he didn’t, or else the plastic surgeon with his beautiful white teeth would’ve said so, but it made me all the madder.
I’ll never be able to thank those that helped us through this enough.
I know that even for all the stress and heartache craniosynostosis did and continues to cause us, it could always be worse. On one of my trips to the pantry, I interrupted a woman making tea. Meaning, I thought she was finished but I didn’t ask and started making our coffees, only to realize my blunder. It’s hard to think straight when you’re pregnant, stressed out, and haven’t slept, but I felt horrible. She was as polite as ever, graciously accepting my apology and telling me about her 5-year-old daughter in there with cancer. She’d been diagnosed over a year ago, and she’d had to quit her job to be able to take her to all of her appointments.
Her husband was a trucker who had to get a different job to be able to stay close to home. Her other children were at home with a family who took turns taking them to school, making them meals, and trading off with her when she needed to go home to shower and change her clothes. I wonder how many other parents she’s seen that looked like I did, frazzled and out of sorts, while she had so much more on her plate.
Craniosynostosis proved it was one of those things.
You don’t know what you’ve got ’til it’s gone, the grass isn’t always greener, hindsight is 20/20. But man when you’re going through it, there’s only one foot in front of the other. There’s only the next cup of coffee, making sure you even drank water that day, remembering I was responsible for another baby growing in my belly and I had to feed her too. Yes, coffee, so sue me. All I can say for anyone going through something similar is to have faith and breathe.
It will pass. It does. And there is always something to be grateful for. If our son had had one of the more rare forms of craniosynostosis they might have had to reconstruct his eye sockets too. Reconstruct his entire face as well as his head, with a helmet afterward. Most importantly, appreciate what you have, love your babies and your crazy families, and just breathe. I pray you never have to see your little ones like we had to see ours, but you’re brave and strong and capable, and as long as you have your babies to hold, don’t let go. If you can, create a life where you don’t have to miss a thing, reach out to me today for any comments or questions, thank you.
Thank you for sharing your story. I’ve been through brain surgery myself as a grown woman, but I cannot imagine one of my babies going through something like that. I think that would have been harder for me than going through it myself.
Thank you for reading my story! It was a very difficult thing to go through and especially knowing that you’re never really ‘done’ with something like this, we will remain vigilant with his development for years to come. I’m sorry to hear that you had a brain surgery yourself, I hope that you’re doing well now! That must have been very scary.