Our son Diego was diagnosed with Left Lambdoid Craniosynostosis when he was 3 months old. This is our story.
I noticed that our son’s head was very flat in the back and bulged out to one side. When we went for his first month check-up, I expressed my concerns to his doctor. Unfortunately, the doctor misdiagnosed him and said he had something called plagiocephaly, which basically meant his head was misshapen because he was favoring one side to sleep on. I was told it was an “easy fix” and to just ensure he slept on the other side of his head more. I did as instructed, but something just didn’t feel right, and I saw no improvement in his head shape.
At his next checkup, I requested he be seen by a new pediatrician. I explained my concern and she immediately began feeling his skull. When she was done, she said she needed to refer us to a specialist at Seattle Children’s Hospital, specifically, the Craniofacial Department. She said she wanted someone to take a better look at the ridge she felt on his skull.
In July 2020, we met with the Craniofacial specialist. After she examined his head, she told me she wanted a Surgeon to join us. I knew then that something was very wrong. Once the Surgeon was done examining Diego’s head, he explained that he believed Diego had a condition I’d never heard before called Craniosynostosis and poopto be certain, he wanted to have a CT scan performed on Diego that day. Fortunately, Diego ended up falling asleep and they were able to perform the CT scan quickly and without needing to put him under anesthesia. Shortly after, we were called back into the room where we got the dreaded news…Diego had Left Lambdoid Craniosynostosis and would need surgery. I tried to stay calm and focused as the doctor described the surgery, the risks, the need for a blood transfusion and the recovery, but I couldn’t. I was completely distraught and couldn’t even have my husband there for support because of COVID restrictions.
For months leading up to his surgery, we had to be completely isolated from friends and family due to COVID. We had to ensure Diego was healthy to undergo this surgery. Even the sniffles could cause his surgery to be postponed, which could lead to complications.
He was 8 months old when he had the surgery in December of 2020. I was a complete wreck that day, especially when it was time to hand him over to the medical team. It felt like an eternity, but after about 4-5 hours he was out of surgery and headed to the PICU. Seeing him connected to all those machines, the tube coming out of his head and the ear to ear incision was absolutely devastating, but at the same time, I was so grateful it was over and on the other side. The first couple of nights in the PICU were rough, but he was healing favorably and four days later, we were finally heading home. I’m absolutely amazed at how strong, resilient and quickly these little warriors bounce back after such an invasive procedure.
Today, Diego is a healthy, happy, and thriving 4-year-old! I’m so proud of him and admire his strength so much! Every year we celebrate his Cranioversary and reflect on our journey and how far he’s come. We also have made it a priority to donate blood as often as we can. It’s the least we can do to thank our donors and pay it forward.
My advice to other Cranio families is to trust your instinct, advocate for your child and get as many second opinions as you need. Also, as much as it may feel like it, you are not alone! The Cranio community is incredibly supportive and open about sharing their experiences. Reach out to those going through it too. It’s what got me through some of my hardest days. Especially one Cranio mama who has become like a sister to me. Finally, I just want to say thank you, Summer and Shelby for doing just that and sharing your sweet babies and your journeys with all of us through your wonderful Organization and your care packages. 💜
