I cannot imagine what life would be like as a parent of a child/children with minor medical issues without my medical background. If it weren’t for my advocating, Ethan wouldn’t be getting his tonsils and adenoids removed in the fall. I went for a (not even a routine) visit to our GP (no pediatricians where we live) for both boys in January to get their ENT (ears, nose, throat) issues sorted out. Braden is a mouth-breather and chronically sounds congested even when he’s not, and Ethan’s tonsils are ginormous, to say the least, causing sleep apnea. Thankfully the doc agreed that it wouldn’t hurt at all to send in a referral to the children’s hospital for ENT for both boys. This process, which is a first for me, takes lots of patience.
We heard back from Children’s within a week, but the appointment to see the surgeon for Ethan took 6 months and we have to wait a whole year for Braden to see the ENT surgeon to assess his adenoids. I understand as a nurse that these surgical consults are triaged, a lot like how we triage in emergency — sickest/most urgent patients will get in first and I agreed that Ethan is far worse than Braden, but a whole year? The kicker is, they’re seeing the same surgeon, so I called the hospital to see if they could be seen at the same time, because they’re related and it would save me 2 hours of driving in the middle of the winter. Their answer? Nope. Sorry. Not happening. I have no idea why, but I didn’t press the issue and figured I’d just take Braden to Ethan’s consult and ask the surgeon to take a look myself. And he did. And Braden doesn’t need surgery. Saved myself the wait and the drive. How hard was that?
Now onto the most concerning aspect of my entire existence as a mother right now. My little Jonathan needs surgery too. At least I think he does, and I desperately need him to see a neurosurgeon to confirm my suspicions or tell me that miraculously I’m wrong and there’s nothing to worry about. Jonathan was born with a ‘ridge’ on the top/back of his skull and no posterior fontanel. When babies are born, their skull bones are not fused together to allow room for the brain to grow. The spaces between the skull bones are called sutures (which are actually fibrous joints) and now that Jonathan is over 2 months old, I have diagnosed him with sagittal craniosynostosis, meaning that the suture on the back of his skull is fused/closed, leaving no room for his brain to grow and expand back there.
The LPN who did Jonathan’s very first assessment after birth noticed it right away and the doctor looked at it. I was told there was nothing to worry about and I assumed his sutures probably overlapped from the birthing process. The ridge on his skull was still there at his two week and six week appointments, and I brought it up then too. Still, I was told it was nothing to worry about. I put it in the back of my mind to keep an eye on, but trusted in what I was told — it was nothing to worry about.
At 8 weeks I started noticing in Jonathan’s pictures that some angles made his head shape look lopsided or like the back right side of his head was “shaved” off. I think I tried to deny any potential problem and ignore it, but promised myself that I would bring it up to the nurse at his 2 month vaccinations. His forehead was also starting to protrude and was very round.
However, on Jonathan’s 2 month birthday I received an email from a blog reader. She said that she tried to write the email a few times but wasn’t sure if she should send it. I’m forever grateful that she did, because it made me stop ignoring a potential problem and face it head on — a true blessing. She told me that her daughter developed a similar head shape to Jonathan’s, and she, like me, brought it up to her doctor time and time again who brushed it off. At her 6 month appointment, she insisted her daughter see a specialist, which was when she found out her daughter had craniosynostosis and needed surgery to fix it. She told me she wouldn’t be able to forgive herself had she not reached out to me, because there is a less invasive surgery (1-2 hours vs. her daughter’s 8 hour surgery) if it is diagnosed and treated in the first 16 weeks of life.
Ever since June 30 I have been all over learning about craniosynostosis. The positive power of social media has helped me connect with local moms whose babies have had this surgery done, others who work at the Alberta Children’s Hospital (ACH) and nurses that I used to work with at the Stollery Children’s Hospital. Obviously I cannot definitively diagnose Jonathan, but I found out that a first stepping stone would be to make an appointment at the head shape clinic at ACH and I could get referred to a neurosurgeon directly from there if they felt it was necessary, which I was certain they would.
Since we were at ACH today already for Ethan’s consult, I went directly to neurosciences myself to make Jonathan an appointment. I was told that he could not get in until July 27th when he’d almost be 13 weeks old. Tears welled up in my eyes as I begged them to get him in sooner because the surgery needed to be done before 16 weeks if he needed it. They could see how distraught I was and urged me to make an appointment with a GP, even go to a walk-in clinic, to get a consult directly with a neurosurgeon.
So that’s where we are as of right now. Off to see a GP on Friday morning and praying that he will give us a consult, actually, to the only plastic surgeon who does endoscopic surgery for craniosynostosis. I have every reason to believe this will happen and I’ll keep praying that this process happens in a timely manner, and ideally that Jonathan does not need surgery at all by some miracle. I won’t stop advocating for Jonathan until we get definitive answers about his health and head. The good news is, is that he’s happy, healthy and thriving and not showing any signs of a more severe case of craniosynostosis where it can delay their development and milestones, from what I’ve read.
Please keep us, especially Jonathan, in your prayers. I love this little man more and more every day and it hurts so much knowing that there’s a high possibility he will be having surgery on his tiny little skull within the next 6 weeks.
P.S. Thank you to each and every one of you who have reached out to me in the comments section on Facebook and Instagram, sent emails and DMs and have offered to share your cranio experiences with me. You have no idea how much better I feel about all of this since last Thursday when this journey started. God bless.