Wesley J.

Muskoka Bear Wear Ambassadors for SickKids

Wesley was born on Wednesday May 9th 2018. We were given an indication that something may be wrong with his head on an ultrasound about two weeks prior to his birth and when he was born we knew right away that something wasn’t right. His forehead was oddly shaped and his eyes were set quite close together and slanted. He was referred to SickKids Hospital at 1 day old.  The first few days of Wesley’s life was a whirlwind of stress over his referral to SickKids and dealing with trips back and forth to the hospital every day for blood work and light therapy to treat his jaundice.

Finally, we had our initial consultation at SickKids with a craniofacial plastic surgeon and neurosurgeon and we received his official diagnosis of “Metopic Craniosynostosis”, or “Trigonocephaly” on Friday June 1st 2018, at just over 3 weeks old.

Craniosynostosis occurs in roughly 1 in every 2500 births.

There are four types of cranio: Saggital, Coronal, Metopic, and Lambdoid. Each represents different cranial sutures that have fused prematurely, and each causes the head to be shaped in its own specific way. Because of the fusions, the skull cannot properly expand as the brain grows.

Metopic (what Wes has), is a rare type of cranio that is estimated to occur in 1 in 15,000 live births, with a 3:1 male to female ratio. The metopic suture runs from the soft spot at the top of his head, all the way down to the bridge of his nose. That suture fused in utero and has caused a ridge down his forehead, causing his head to take on a triangular shape. From a birds-eye view his head was tear-drop shaped rather than rounded. This type of synostosis causes close-set eyes with upslanting.

Craniosynostosis is known to be a cause of high intracranial pressure, which could cause vision problems, hearing problems, headaches, developmental delays, seizures, etc.

On July 23rd 2018, at just 10 weeks old, Wesley underwent an endoscopic strip craniectomy to correct his head shape and prevent high intracranial pressure. A small incision was made just behind his hairline and the fused portion of his skull was cut out and removed, leaving a space in his skull from the anterior fontanelle to the bridge of his nose.  We are so thankful to be at Sick Kids and for Wesley to be treated by some of the leading surgeons in the world, Dr. Drake (Neurosurgeon) and Dr. Forrest (Plastic surgeon).

Wesley now continues his journey by wearing a special orthotic helmet to help shape his head properly as he grows. He wears the helmet for 23 hours a day, every day and will likely wear it for around 8 months.

Wesley will be 5 months old next week and has spent a large number of days at SickKids Hospital since his birth. He’s had many scans of his head, many different consultations including ophthalmologist and geneticist, as well as being continuously followed by both his plastic surgeon and his Neurosurgeon.  He recently had a chromosome microarray blood test done and we are waiting on his results.

Thank you

Natalie J. (Wesley’s mom)

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