Have you ever been so convinced of something that it took over your entire world? So convinced, that it engulfed your entire being. Every thought, every word, every feeling, constantly revolved around this one conviction.
I have.
While everyone around me said I was "acting crazy" and "looking for something to be wrong", I knew deep down in every bone, and every crevice of my body, that I was right. I felt it in my soul.
A few weeks ago, I let you guys in on my battle with postpartum depression. I told you what I felt, and how I felt, but what I didn't tell you about was one of the biggest culprits behind it.
Before we dive in, I want to share a smidge about me and my professional background so that certain aspects of what I'm about to tell you make more sense. Up until three years ago, I worked as a full time Registered Respiratory Therapist in one of THE busiest pediatric hospitals in my region of the country. Specifically, I worked primarily in the pediatric intensive care unit (PICU), taking care of some of the sickest kids in the world. When I tell you I have seen it all, I truly mean I have seen it all. From kids born with illnesses requiring hospitalization, to kids born completely healthy and then falling victim to unexpected tragedy or illness-and yes, it is absolutely as devastating as it sounds. Sadness and death are hard, always. When you have seen sadness and death in innocent children as much as I have, it takes it to a whole new level. It changes a person so much, that we all have a running joke about "PICU parents", and the little "normalcy" we let our children have because our everyday lives consisted of so much sorrow. After giving birth to my first child, I was ready for a change, so I stepped into the research side of things. While I'm still in the same place, the hours are better and the mental toll is much less. However, let's just say you can take the girl out of the PICU, but not the PICU out of the girl.
Now, back to the story.
Three out of the first four months of my son's life were spent with me in a complete craze, and not just because of the PPD. He was born in June last year, and was presumed completely healthy. With our regular pediatrician out on maternity leave, other doctors in the office were lined up to handle his one-month and two-month checkups. Typically, I prefer to have a rapport with whoever is treating my kids, but with it being my second child and given my experience and familiarity with the system, it was fine.
The first month came and passed, and it was time for his first real checkup at that one-month appointment. He was a full-term, healthy baby, so it went quickly, and was uneventful. The substituting doctor asked the typical questions, and I answered in few words, ready to get out of there and back home. We were tired, I was still hurting from my C-section, and it was the middle of summer-hot and humid. The only thing I remember from that appointment was her comment about my son's "prominent forehead,"which she laughed off and said he would grow into. When I briefly pushed to make sure it was "normal", she reassured me it was. Momentarily, I let it go.
That night, all hell broke loose inside my head.
As I sat next to my baby's bassinet while he peacefully dozed off, I couldn't keep my eyes off of him. They kept bouncing back and forth across his head as if they were glued to a game of ping-pong. The forehead that she considered nothing more than a prominent feature was quickly becoming my biggest concern. I spent the entire night skipping out on sleep in order to do the one thing I constantly beg my friends not to do: consult Dr. Google.
After hours of reading about "prominent foreheads", I felt defeated. What to look for, what to do, what the possible cause was-nothing was new information anymore. It seemed as if I was reading the same article over and over. My brain decided that it finally had enough. Just as I was about to exit the last page I had clicked on, a strange and unfamiliar word caught my eye: craniosynostosis. Cranio-what? In my years of working in the PICU, there was not a single time that I had come across this term. In that moment of reading it for the first time, I felt my heart sink in my chest.
I landed on a story about a little boy from Canada that was born with the rare condition. Before I even fully dove into the words, I immediately noticed the accompanying pictures. The head shape looked all-too-familiar. Typically, babies are born with soft heads, not only to get them through the birth canal, but also to allow for their brains to grow. The pieces of the skull are not yet fused together like they are in adults. If the skull knits itself together too soon (craniosynostosis), the brain doesn't have enough room to properly grow and expand. Early closure of the skull can result in a misshapen head, and possibly (you guessed it) a bulging forehead.
I looked over at my baby as he lay there with his sweet lips pursed, snoring away without a care in the world. At any other moment I would have smiled in awe of the beauty I helped create, but instead I felt warm tears graze my cheeks. He didn't have the obvious narrow face (another hallmark), but he had really full cheeks that might help hide that. The once "strong" forehead now seemed sinister. It was a sign that something could be wrong, and that he wouldn't just "grow into it". I pulled up the page again, and kept looking at the similarities. Deciding I would wait until I could wake him and take a thorough look, I scrolled to read what would happen if he did have it.
Things got a lot more intense. This wasn't something that could just be observed or easily fixed. It was much more than that. These kids had to have a surgery extensive enough to require not only a plastic surgeon for shape correction, but also a neurosurgeon for brain protection. Not a chance in hell, I thought. So what if they had a funky head shape? As I read further, I quickly learned it wasn't just a cosmetic thing. It was a developmental thing. Without correction it could lead to serious developmental delays due to the restrictions it would cause on brain growth.
Language issues, speech delays, vision impairment, and even full-blown blindness were all potential side effects of this condition. With no way to truly predict which kid would suffer from what, the only solution was to almost always put them through corrective surgery. If you are lucky and catch it early enough, you can go through a less invasive surgery. If it's too late, a much more intensive procedure is required that completely opens the skull and exposes the brain. Regardless, both are serious, and both carry the risk of serious complications.
As the sun came up, and my precious boy stirred, I picked him up and held him tight. My soft trickle of tears had now become a full-blown downpour. What if he really has craniosynostosis? What if he has to have surgery? What if they are missing it? As a million thoughts flew through my head, my daughter's soft voice pulled me back into the present. My husband, walking behind her, looked at me with confusion, and before he could even ask, a million words poured out of my mouth. Just as quickly as I told him what I had read and found, he dismissed the idea and said I was doing what I always did: becoming anxious over nothing. I tried to argue back, but he wouldn't hear it. In his eyes, I was a sleep-deprived mom that was permanently scarred by my PICU years.
As the weeks flew by, I continued falling deeper down the rabbit hole. Every chance I had was spent on the internet, reading page after page. I tried to talk to my husband, my parents, and my colleagues, but every single time I was being shut down. No one would listen. No one believed me. No one saw anything wrong. I began to feel like I was insane. On top of dealing with postpartum depression, this was now adding an entire new set of challenges to my mental instability. We went to his next checkup at two months, and I was ready to push hard to get an actual opinion. The now third doctor to lay eyes on my son laughed and said, "PICU moms always assume the worst. His head is normal, and he will grow into it." At this point I felt fully defeated.
Everyone thought I was crazy, and I began to believe it too. Medical professionals who were much more highly trained than I was kept telling me everything was fine, so why could I not let it go? Why did my heart sink every time I looked at his head? Why could I not accept that everything was ok and move on? I made an internal agreement with myself to let it go until his next checkup at four months. That gave me two full months to watch his development, track his progress, and to ensure that he was doing ok.
And he was.
He hit every milestone ahead of time. He was happy. He was healthy. He was a normal baby. I began to relax as the weeks went by, but never fully let the thought go. One evening, as I was giving him his bath, I moved my hand over his head to wash his hair, and that same sinking feeling came over me. As I moved my hand back and forth, it became clear. There was some sort of growth on his head. It was a hard ridge, like a bone. Right there in the middle of his head, there was what felt like a tiny little fin. I yelled for my husband, and at this point was full blown panicking. He couldn't see it, but once I lead his fingers to the spot in question, he felt the same thing I did.
Every single picture I had seen on all of the websites I had poured through came flooding back. Every word describing this condition was now replaying in my head. I was 100% convinced that he had it. We had three weeks left before his four-month checkup, and somehow my husband convinced me to wait for the appointment. Even with this new, hard, bony ridge, not a single person took me seriously. My husband didn't want to hear it. He said I was stressing over something that probably wasn't happening. My parents were in the same boat he was. At work when I frantically tried to explain what I found to my co-workers, often through tears, they laughed, and told me to stick to what I knew, which was not neurosurgery. I had never felt more alone in my life.
Tired of screaming for help with no response, I decided I had finally had enough. I had done my research and found a local plastic surgeon that specialized in these types of cases. I was contemplating contacting him, but felt conflicted. We had only two days to go before our four-month checkup, but I was ripping at the seams. I expected to be blown off, and to be told I was crazy. On the other hand, a small inner voice still kept repeating that something was wrong. So, after much internal back and forth, I decided to email him.
Within 20 minutes, my phone lit up. It was him. I had expected an annoyed response, it was after all a Saturday, and Halloween no less. He was probably home with his family. Instead, it was the complete opposite. He asked for pictures right away, and said he would get us in that upcoming Wednesday if he thought we needed to be seen. I snapped a few pictures per his instructions, and hit send. The minutes leading up to his response tore my heart in half. This was it. The moment of truth. If he wanted to see us, chances were he suspected that I could be right. My phone went off again. I looked down at his email requesting us to come in on Wednesday. My entire world was shattered.
The next few days flew by in a river of tears and sleepless nights. I held on to my son tighter than ever before.
On Wednesday, as my husband and I sat opposite of each other in the exam room, no words were spoken. There was no need. As our four-month-old son buried his head into my shoulder, my tears continued to wash over his hair, because deep down, I already knew. The plastic surgeon stepped in, and for the first time someone truly listened to my concerns. I told him everything that had happened, how I came to the conclusion, and how not a single doctor believed me enough to even get me a proper exam. Without a word, he performed a physical exam and sent us down for the final piece of the puzzle: a scan of my baby's head. Within minutes we were back in the exam room, and he was walking in carrying the image of the scan. He stood directly in front of me, handed me the image, and said, "moms just know."
After months of going crazy around this one conviction, it was finally confirmed. There it was, clear as day. Parts of his skull were completely closed. I looked over at my husband, tears in his eyes; the color had drained from his face. I was pulled back to reality by the doctor's voice. "Amila, due to him being four months, we are at the cut off for the less invasive surgery. We should discuss our options while we have time." I nodded as I realized we could not stop to process the diagnosis. We had to move, and move quickly. The next several hours were spent learning about the condition, weighing the options between the two surgeries, and meeting the neurosurgeon that would be involved. This less invasive option would require him to wear a helmet until his first birthday, but we easily agreed to this. Anything that would require less cutting into our son's head was the better option for us.
I had mixed emotions. There were some feelings of success, and part of me bloomed with motherly pride. My persistence that something was not right had resulted in catching the condition before his brain development was impacted. We also caught it while we still were in the timeframe for the less invasive surgery. At the same moment, there was also crushing sadness and uncontrollable anxiety. With him already being four months at the time of diagnosis, it meant we had only four days to prepare for his surgery. Four days. Those four days were spent in tears and prayer. If I could have traded places with my baby, I would have without hesitation. Any mother would.
The day arrived before we knew it, and at the crack of dawn, our sweet and innocent baby boy was being prepped for major surgery. He laughed and smiled as the surgical team fought over who would carry him back into the operating room. My "Mr. Cheeks" was a popular guy. As we watched him glance back at us, we both broke down. We now had two hours where all we could do was wait. We sat and were consumed with wondering how things were going, if there would be any complications, and if he would make it out ok. My years in the PICU introduced me to the worst-case scenario one too many times. My biggest fear was that something would go wrong, changing our lives forever.
About two hours later, we saw both the plastic surgeon and neurosurgeon making their way to us. I eagerly jumped up, desperate to know how it went. They confirmed that they were finishing the last stitches, and that the surgery had gone beautifully without complication. Thank God. When they finally came to take us back to see him, everything around me slowed down. The voices were muffled, and as we walked through the double doors it seemed as if everything was at a snail's pace. I felt the looks of the staff that I had shared many moments with during my years of working there, but my eyes were glued in the direction we were heading. I could hear his soft, raspy cries. As we turned the corner, there he was.
Clearly out of it, and in pain, but there he was. Swollen, but alive. Crying, but alive. Bandaged, but alive. My heart was pounding so hard; I thought it would burst out of my chest. I didn't even have time to process how my husband was doing in these moments, because absolutely nothing mattered, except him. My sweet boy. The nurse turned around and smiled, asking if I was ready to hold him. I'm ready to never let him go again. As he snuggled up next to my chest, he drifted off to sleep as his pain medicine kicked in. I carried him through the halls up to his recovery room. I had only ever envisioned myself caring for other children in this space, never my own. As I learned the hard way through this process, we never know what fate may have in store for us.
While the medicine kept him asleep, my husband and I sat in silence, staring at the swollen, yet still perfect, face of our little guy. There could have been so many things said. I could have been angry, I could have said, "I told you so", but this was never something I would gloat about. None of that mattered. What mattered was that even when no one else believed me, I believed myself. In that moment, when we finally knew things would be ok, my husband looked at me gently and said, "Thank you for being you, and for being the best mom for these kids." I remember shaking my head lightly dismissing it, because he didn't need to say it. His eyes said it all. We had been through enough together to need no words.
That night was spent with lots of tears, both mine, and my little guy's. When he was finally able to open his eyes after the swelling went down, he looked directly at us, and smiled. He smiled. He was still my baby. Nothing had changed. I don't know what I expected, but I was afraid things would never be the same again. The next morning, he was almost fully back to his old self, and as soon as his helmet arrived, we were on our way home.
It's now been almost four months since his surgery. He is constantly on the move, and I never thought I'd be this thankful for a helmet. He proved my fears wrong by continuing to hit all major milestones way ahead of schedule. He lives in his helmet 23 hours of the day, but doesn't mind it one bit. When he turns one this summer, we will not only celebrate his first year of life, but we will also celebrate graduating from his helmet. We will celebrate everything that he has overcome in such a short time.
My message to you all is to follow your gut. Follow your instincts, and continue to be persistent. Be the advocate that your child needs. Things get missed all the time. I think about the different life my son could have had if I had not persisted, and it brings me pain every time. He could have suffered had I given up. But I didn't.
No matter what anyone tells you, always remember: moms just know.
-A