Andreas was born February 20, 2018 after 53 hours of an induced labour. He ended up arriving via emergency caesarian section and we were so happy to finally meet this perfect little human. Everything about him was perfect – including his head shape!
When he was six months old, we noticed his head was shaped oddly at the back. He was a tummy sleeper by then so we pretty much ruled out plagiocephaly. When he went it for his 6 month immunization, I brought up the oddly shaped head with the public health nurse. She was equally concerned so connected us with the family doctor who made a referral to a pediatrician and directly to the craniofacial clinic at the Children’s Hospital in Winnipeg, Manitoba Canada including an MRI. The fall of 2018 was a bit of a blur including a flurry of appointments with an overwhelming amount of information about craniosynostosis, a term which we had never heard of before.
By the time he was officially diagnosed with partial right lambdoid craniosynostosis in mid-November 2018, I was sure of the diagnosis myself even before receiving confirmation from the surgical team. We were informed his type of craniosynostosis was one of the rarest forms, which was why he needed a CT scan to confirm it. Other forms of craniosynostosis can be diagnosed through observation.
In terms of testing, Andreas received an MRI, x-ray, CT scan and numerous “star scans”, which is a method of taking a picture of the shape of the skull. We needed pre-op and post-op photos with the star scan. We discussed dates for surgery with our team and ultimately decided January 10, 2019 he would be having cranial vault remodeling (CVR). We were terrified. We spent many sleepless nights wondering if he would be okay and thinking all the horrible things that could happen to our perfect boy with the wonky head and wonky ear (often the ears are affected with lambdoid).
Aside from thinking about the worst case scenarios, we also worried if he would ever sleep, eat or act normally again after surgery. It truly feels like a weight has been lifted once you get “to the other side”. You realize how incredibly resilient your baby is. After surgery, our surgeon informed us when he opened him up the suture continued to fuse in Andreas’s head and the right side was a complete fusion and it was continuing to fuse on the left side. At the CT scan done a couple of months prior to surgery, he had been diagnosed with partial right lambdoid so he will continue to be monitored in the hopes that he will not require another surgery and that his head shape is growing normally.
We were sent home 3 days after surgery. He was to sleep with a tucker sling and wedge in his crib to elevate his head to reduce any swelling. Andreas required a couple of blood transfusions during surgery. The anesthetic seemed to affect his appetite for about a month. He was also nervous about being laid down on his back when he needed a diaper change. We were told this was mostly likely related to trauma from the surgery having been laid down, put to sleep and then woken up with his head wrapped up and strapped to a hospital bed. Both of these issues went away quickly, after reassurance and lots of cuddles.
Andreas is thriving today and meeting all of his developmental milestones today. He sleeps very well, eats like a machine and is growing like a weed!