Liam’s Journey - Living with Muenke Syndrome

Liam was born on May 14, 2021. After an ultrasound, x-ray and CT scan, Liam was diagnosed with bicoronal craniosynostosis at one month old. We didn’t know his craniosynostosis was caused by Muenke Syndrome until Liam was six months old. Muenke Syndrome is characterized by craniosynostosis (the premature fusion of one or more skull sutures), hearing loss and developmental delays. Soon after the diagnosis, we met with our pediatric plastic surgeon and neurosurgeon to discuss how they were going to correct Liam’s craniosynostosis. The biggest concern with any craniosynostosis diagnosis is the lack of room for a child’s brain to grow. It can eventually cause seizures, developmental delays and other complications including death.

December 2021

Surgery: Posterior Cranial Vault Distraction

April Update

Surgery: Distractor Removal

May Update

Complications

June Update

Complications

July Update

Two More Surgeries

August Update

Wounds that never heal.

September Update

Inflammation and Speech Therapy

Mastodon