Craniosynostosis // Diagnosis

"You may have noticed that her head is shaped a little funny..." our pediatrician said to us the morning we were discharged from the hospital. Mia Kai was three days old.

"No, but we did notice she has a lot of hair on her shoulders and back. Is that normal?" I asked him as JD and I laughed. My brother was born with a cone head so I was expecting that Mia Kai would have some kind of funny shaped head. It seemed like one of those 'normal abnormalities' the nurse mentioned during our childbirth classes.

Dr. Patz laughed and said, "It should round out over the next few days but if not, I'll check it again at her two week appointment." 

Read More

Craniosynostosis // Mia Kai's Journey

Our sweet little girl, Mia Kai, was diagnosed with sagittal synostosis (a form of Craniosynostosis) at four weeks old. Basically her skull fused together prematurely over one of her soft spots, giving the brain little room to grow. Rather than her head rounding out, it became elongated in the back and a ridgeline formed down the center of the top of her head. She had cranial reconstructive surgery June 28th which consisted of a neurosurgeon and plastic surgeon separating her skull then placing wires and dissolvable screws in her skull in order to hold it into place. They stitched it up with dissolvable stitches underneath the scalp and placed steri strips over the incision. The major recovery time typically only lasts for one to two weeks. The nurse told us that she's one of the youngest patients to undergo this procedure at Vanderbilt (she turned exactly 12 weeks old on the day of the procedure). This is her story...

Read More