THE LONGEST WAIT
I went back and forth on whether or not I wanted to blog about this; it is extremely personal, not just to Chris and I, but also to Andie. I don’t want to put something out there that will she will forever be mistakenly associated with, and I especially do not want to treat this experience simply as content. That being said, one of the biggest hurdles I faced with it all was the complete lack of information about these conditions online. We exist in a society of instant gratification, you can find practically any answer to any question you may have on the internet. Not being able to find many (and in some cases any) answers, was complete torture. So I decided to share our experience with the hope that it can bring another completely panicked parent, a shred of comfort while they wait for actual answers.
When Andie was born she had really prominent suture lines, which are the lines between the different pieces of the skull. Suture lines aren’t fused at birth, in order for baby’s head to be able to (literally) squeeze out of the birth canal. It’s completely normal, so I didn’t think much of them initially. However, hers seemed to remain noticeable a fews week later. I remember taking this picture for an instastory and the colour filter really emphasized them. As her hair came in a bit they were less noticeable, but I was always aware they were there and just not really concerned.
As time went on and she began to grow and develop into her own little person, we started to get the normal second child questions like “Do you think she looks like Lou? Are they different babies? Do they have the same temperament?” etc. All normal questions. One day, while I was chatting about their similarities/differences with my Mom and sister, I commented on how her head shape was different from Lou’s in the sense that it felt wider at the top. They both dismissed it saying her head was perfectly round, which I agreed it was. She just had more of a square-shaped face and Lou had more of an oval-shaped face. Different babies have different features. It was just an innocent observation, so again… I wasn’t concerned.
A few days later in a follow-up conversation with my Mom, and for a reason I don’t really know, I mentioned the lines on her head. She’d recently rubbed off a lot of her baby hair from rolling and being more mobile, so her scalp was more visible. When I went to point out the lines to my mom, my attention was drawn to a particular line. It seemed to run from her fontanelle (her soft spot), and down the left side of her face. It was a bit darker, and it felt indented. Almost like a river bed. My mom seemed a bit confused by it, and we both acknowledged that it was worth mentioning to our doctor at her next appointment.
That night before I went to bed I committed the cardinal mom-sin and I Googled it. For the record, I am a responsible Googler. I do not run to Google for every little thing and when I do reference it, it’s usually done in an effort to dismiss my worries. I find comfort in the millions of explanations (good and bad) that I am able to research. I use the good ones to dismiss the bad ones, and almost always walk away feeling worry-free. The problem this time, was that there were no good explanations. I struggled to find anything that was representative of what I was seeing. I played with the wording and descriptors, and eventually landed on craniosynostosis. No matter how I described the line, I kept getting craniosynostosis. It’s a condition when the suture lines in baby’s head fuse too early, not leaving enough space for the brain to develop, resulting in a ridge along the suture line and eventually a misshapen skull. I called Chris upstairs and felt a panic like I’ve never experienced before. I couldn’t find any other explanation and this one terrified me. I wanted to go wake her up and examine her head, Chris (feeding off my fear) wanted to take her to the emergency room. I called my Mom and sent her pictures and articles, and cried my heart out. It was a Tuesday night and our doctor is not open Wednesdays, so I knew I was going to have to sit with this fear for two days. I didn’t sleep, I cried and I kept Googling just desperate to find another answer.
In the morning we both analyzed her head and the line, and I initially found reassurance in the fact that her line wasn’t exactly a “ridge”. It was an indent, and her head was completely symmetrical. I kept thinking our doctor was going to take one look at her head and tell me I’m completely nuts and what I was seeing was completely normal. There was no ridge, just a small space between the two plates. After an hour or so of feeling like all my worry was for nothing, I began to research the space between the lines while (once again) fully expecting to find out that it was completely normal. Then, suddenly a picture popped up. It was exactly the same line Andie had; a darker line running from the top of the baby’s face, down one side and slightly indented. The picture was from a community mom post, where a mother was asking about a condition called suture separation. She described it exactly as I was seeing it on my own baby, and she’d never followed up on the thread to say what the outcome was.
I immediately started researching. Suture separation is the result of intracranial pressure; when something causes too much pressure in the brain, it pushes on the skull, and causes visible spacing along the suture lines. All of the things that cause suture separation are bad. They are all scary diagnoses and many of them have poor survival rates. If you try to research suture separation in infants, there are different medical articles and about 5 different posts from concerned mothers and a few included pictures. I could not find a single confirmed medical standard to reference, the only information I could find was that if the suture lines appear to have “abnormal spacing” that we needed to see a doctor. I had no reference for what abnormal spacing meant. I could see it… does that constitute abnormal? I cried, I didn’t sleep again, and immediately called our doctor Thursday morning for an emergency appointment.
I drove there telling myself I’m crazy, I’m just being an over-cautious mother, and that he was going to tell me that what I was seeing was nothing to worry about. I went in calm and positive, expecting to leave the same way, but it didn’t go that way. He was unsure about the line, and upon some investigation he identified that her head was growing at a faster-than-expected trajectory (another sign of suture separation). He recommended we see a neurologist. I broke down crying because now the fear was real. I wasn’t over-exaggerating, it wasn’t entirely normal, and I did potentially have reason to worry. I just cried and looked at my doctor, “Is there something wrong with her?” It’s important to note that this is the same doctor I’ve had my entire life, and he’s notorious for being confidently dismissive when there is no reason to worry. This time though, he looked at me and teared up, put his hand on my knee and just said “We’re going to check”. I walked out of that appointment like I’d been hit by a bomb; emotionally shell-shocked. Chris had done his best to be so optimistic the whole time, but this really changed everything. Now we did have a reason to worry. She fell asleep in the car on the way home and I just sat in my driveway sobbing. This can’t be happening.
Delays due to covid meant that we were going to have to wait it out. It took weeks for our referral to even get a response, but we were eventually informed that we would be seeing two paediatric neurosurgeons, almost eight weeks later. I spent the first days numb, uncontrollably sobbing whenever I wasn’t busy parenting. What did this all mean? How could anything be wrong with my beautiful baby? Was there something I could have done differently when I was pregnant? I can honestly say I don’t think I’ve ever felt scared before, and now I was spending my days consumed by fear. I thought of all the ways this could go, and tried to prepare myself for the worst. What if it’s bad? How will I survive this? What would I tell Lou? I felt completely helpless. We didn’t tell anyone outside of family and a few close friends, because we honestly just didn’t want it to be real.
After a little while, I made the decision to not spend my time at home with my babies in that kind of a state. After all, there was also still the potential that nothing was wrong, and I didn’t want to waste eight weeks on worry. I did my best to put it away and kept my emotions to myself, occasionally crying myself to sleep but not letting it take me away from being in the moment with my children. Outside of family life though, I was completely checked out. I didn’t respond to messages, I didn’t follow-up with people. Weeks started to go by and finally, it was the week of our appointment but as it approached all the fears came back. I was restless at night again, and couldn’t help but cry when I’d nurse her to sleep.
I had no idea how the appointment was going to go or if we would be sent for any scans/tests, and my type-A personality had me prepared for everything I could think of. We packed up snacks, toys, blankets, and carriers. Chris reluctantly dropped us off at the door (with covid restrictions only one parent was permitted). I checked in, we were sent for photographs and then had a briefing with a resident. After a few questions and a quick exam of her head, the resident doctor left to go “get the team”. I sat in that room just kissing my baby and making her laugh, while trying to bottle up the crippling fear in the pit of my stomach. In walked four doctors, two of them surgeons. No introductions, they just walked straight over to Andie and with one quick examination of her head one of the surgeons casually goes “It’s a vessel. Just a blood vessel.” I just looked back in complete shock, and then I asked about her head measuring in a higher percentile. The second surgeon examines her and says “No, her head is perfect.” All the fear and anxiety released out of my body in tears and I just started kissing Andie and thanking the doctors. They explained that it’s just a blood vessel and because her head doesn’t have much fat on it yet, it’s visible. As she grows, she’ll develop more fatty tissue on her head and we’ll never even know it was there. Allll that worry and my Andie girl, they literally diagnosed you perfect. It’s the way I’ve always felt about you.
I walked out of there like I’d stolen the hope diamond. I was speechless and processing. I didn’t feel stupid or dramatic, I felt responsible and relieved. They were two things worth looking at, we did the right thing to get them checked, and we are leaving this experience with the best possible outcome. Updating our people who knew the situation with good news, was cathartic. Especially my parents. Having had to navigate their own child’s illness many years ago, this fear was personal to them and I am so grateful for their support during that awful wait.
It’s wild how many parents have to experience scares like this with their children, and even in the best case scenario like ours, it’s still traumatic. I feel like I’m still processing and healing from it. I think the fear of it being a reality stops a lot of parents from speaking much about it or seeking much support during that waiting period. We were guilty of that ourselves. My heart aches for the parent up at 3am on their phone, crying and looking desperately online for a shred of comfort. I can’t do anything to help, only appropriate medical care can. But, if you’ve stumbled across this page and you’re in my specific shoes hopefully this post with bring you a small piece of hope.
I am no doctor (and neither is Google), but here are some important things to note about suture separation that we were told by medical professionals:
The spacing likely won’t fluctuate, it would be a gradual increase over time
You would likely notice delays in development
It typically isn’t unilateral; you will see separation along multiple suture lines and often the fontanelle (soft spot) will appear to bulge
Baby may experience side effects such as seizures
