Emilia’s Story: Craniosynostosis during COVID-19

 

When Emilia Galarneau grows up, she’ll have quite an exciting story to tell about her birth. According to the Connecticut Children’s Medical Center, Emilia was born on March 6th, just shortly before COVID-19 was declared a global pandemic. At home, the newborn spent time with her parents, Brittaney and Eric, and her two brothers. But then life got a bit more complicated when Brittaney noticed Emilia’s forehead ridge. After some research, Brittaney was pretty sure what it was: craniosynostosis.

Craniosynostosis

Craniosynostosis is a birth defect which occurs when fibrous joints that sit between skull bones close before the skull is fully formed. However, the brain grows normally. As a result, the head often looks misshapen. There are four main subsets of craniosynostosis depending on what suture is affected:

  • Coronal: coronal sutures run from the ear to the top of the skull. In cases of coronal craniosynostosis, one of these sutures closes prematurely. As a result, the nose may shift. Babies may experience one side of the forehead flattening and the other side bulging.
  • Lambdoid: lambdoid sutures run across the skull near the back of the head. In this case, one side of the baby’s head may appear flat, with one ear higher and a tilted head. This is the rarest form.
  • Metopic: this suture runs from the top of the bridge of the nose through the middle of the forehead and ends near the anterior fontanel (that soft spot on the baby’s head). In these cases, babies may exhibit a triangular forehead with a wide base of the head.
  • Sagittal: in the most common form of craniosynostosis, the sagittal suture (runs from the front to the back of the skull) causes the appearance of a long, narrow head.

Other symptoms of craniosynostosis include:

  • Slow (or minimal) head growth
  • A raised, hard ridge along affected sutures
  • Disappearing fontanel
  • A misshapen skull

Learn more about craniosynostosis here.

Emilia’s Story

First, Emilia’s parents needed a diagnosis. As many people in the rare disease community know, this is sometimes difficult. However, the journey to diagnosis was luckily easy for Brittaney and Eric. After using the MyChart app, and engaging in a few video discussions, Emilia was diagnosed with craniosynostosis.

Eventually, Emilia’s parents were referred to Dr. Jonathan Martin, MD, FAANS at the Connecticut Children’s Medical Cenceter. The young girl would need surgery, and Dr. Martin is an expert in his field. But because of COVID-19, the surgery needed to be put off.

In May, Emilia underwent an endoscopic procedure to separate the prematurely-fused areas. During the time, Brittaney notes the comfort and care she received. Additionally, Connecticut Children’s used specialized technology to keep her family informed. For example, with the EASE App:

It would ding and say, ‘Surgery’s begun, everything’s going great,’ and ‘Emilia is asleep now, everything went perfectly.’

Now, at 4 months old, Emilia is a perfectly healthy baby. She is full of joy and loves spending time with her older brothers. Even though she is required to wear a helmet for at least a year, nobody in the family minds. After all, having her come home from a pandemic, and make it through surgery, is the best gift of all.


Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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