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On May 8, 2016, at the QEII hospital in Grande Prairie, AB, we were blessed with our baby girl, Skyrah Lee Teresa. When she was born she was immediately sent for blood work. The doctor thought there was a chance she had Down Syndrome. We were sent home with her the next day, not knowing the verdict. We had a follow-up appointment with a Pediatrician, early June, still not receiving any diagnosis, only to be sent for more blood work.
It was during her scheduled vaccination in October that our answer started to come together. The health nurse asked if I had any concerns, at which time I told her that I was worried about the shape of her head. She referred me to a Physiotherapist who she felt would be able to help us. At the appointment with the Physiotherapist it was determined that Skyrah should go to the head shaping clinic at the Stollery in Edmonton. There, she assured us, they had the best equipment to help Skyrah. We received the call from the Stollery 4 days later and had an appointment scheduled almost immediately.
On November 9th, my mom, I, Skyrah and my 3 year old son made the 4 hour trip to Edmonton. We finally received a diagnosis. She had Saethre-Chotzen syndrome, a mutated gene which caused the premature fusing of her skull sutures, and which would require surgery prior to her first birthday.
Craniosynostosis is a rare condition in which an infant has an abnormally shaped skull after the cranial sutures fuse to early. The main treatment for craniosynostosis is surgery to make sure the child's brain has enough room to grow. Surgeons open the fused fibrous seams (sutures) in the skull. Surgery helps the skull grow into a more typical shape and prevents a buildup of pressure on the brain. Skyrah's surgery will consist of placing growth plates in her skull, which will allow her brain to grow correctly, as well as building up the bones (brow) above both eyes.
She was sent for a CT Scan, after which we met with the Neurosurgeon. We were then asked if we could stay overnight in Edmonton so a Pediatrician could do an assessment on Skyrah's overall health. We complied and met with the Doctor in the morning prior to making the trip back home.
On December 7, we had to make the trip back down to Edmonton. She had an appointment with an Ophthalmologist. They examined her eyes, took pictures and measurements of her eyes and her socket structure. We were informed that she would be requiring follow up appointments after the surgery.
We will be returning to Edmonton on Monday, January 9th for a MRI. Due to the early appointment time and winter driving conditions, we will once again have to travel the day prior and stay the night in a hotel.
We then will be returning to Edmonton on Thursday January 12, for an appointment with the Plastic Surgeon on Friday January 13th.
The actual date of Skyrah's surgery has not been confirmed. We only know that it will be prior to or close to her first birthday. She will be hospitalized for one week and will have to stay in Edmonton for 2-3 days after her release.
After surgery, she will have follow up appointments alternating between the pediatric neurosurgeon and craniofacial surgeon, at one week, one month, three months, nine months, and one year, and followed by annual appointments with both surgeons until the age of five.
These appointments will be in Edmonton. This will incur expenses for fuel, overnight stays, meals; expenses which will put an enormous strain on our household budget.
Any little bit of help to assist my family to cover some of the financial burden would be so greatly appreciated.