Lucky To Live in Orlando: Our Craniosynostosis Story

I have never been happier to be an Orlando resident than when my sweet two-week-old baby was diagnosed with sagittal craniosynostosis. 

It was a normal day for our new family of four, which of course means we were running late for my newborn’s checkup at the pediatrician’s office. These visits were mostly formalities in my mind anyway. I had a wonderfully uneventful pregnancy, a quick labor, and a perfect baby. Our toddler had sailed through these visits with the right weight gain, the right measurements, the right everything, so I was expecting the same easy-breezy visit this time around. 

Our doctor looked at him and cooed over how cute he was. He talked about how fun it will be for us to be a family of four, and for our daughter to have a younger brother just two and a half years younger. He joked that he would outgrow her soon, being over two pounds heavier at birth than she had been. He took him from me, cradled him in his hands, and proclaimed what great eye contact he already had. 

And then he stopped talking. His face changed. All mothers can recognize this subtle shift on a doctor.

He felt around on the back of his head. Turned him over a couple of times. Ran his hand down the center of his head. 

“I’m going to send you to a specialist,” he finally said, very carefully and clearly aware a newly postpartum mother was in his audience. “I am pretty certain he has craniosynostosis.” 


As he explained the diagnosis, all the air was slowly being sucked out of the room. The plates in his skull, instead of leaving room to move as he grew, had prematurely fused together. The funny looking headshape I and everyone else attributed to just being a newborn was due to his brain pushing his skull out in the back since it couldn’t grow any wider. He would need surgery. Soon. Preferably around three months old. 

We saw neurosurgeons and plastic surgeons. He had a CT scan that confirmed the diagnosis. We set a date for surgery just one day after he turned three months old. He had blood tests and physicals confirming he was healthy enough for surgery. And then it was time to gather up every ounce of strength we had (and pretend we had some more) and hand over our baby to a surgical nurse. She was so kind. She smiled at him and cradled him in her arms, squeezing my shoulder and telling me they would take good care of him. 


In the PICU, where we met some of the kindest nurses on the planet

I always knew Orlando was a great place to live when it came to medical services, but I have a new appreciation for how close we are to some of the best care in the country. Each step of the way—every test, every meeting, every appointment—I felt like my baby was cared for and respected. Every person who ever touched my baby, from drawing blood, to administering blood transfusions, to fitting his cranial orthotic, has done so with love. During those long nights of Googling treatments, I saw so many people who had to travel hours to get to a hospital with an appropriate pediatric neurosurgery unit. Ours is fifteen minutes away from our house with cutting-edge technology. And it looks like Disney inside. 


Leaving through the lobby of FL Hospital’s Disney Pavilion.


On The Other Side of Surgery

Craniosynostosis affects 1 in every 2,500 births in America, so it is not totally unlikely that you will someday know someone diagnosed with it. Today our cranio baby is hitting his milestones and growing like crazy. He has shown me such strength and trust. He has highlighted what I previously took for granted. We went through a terrifying experience together and came out the other side newly aware of what you can endure with love, support,  and a lot of amazing medical personnel. 

I would like to thank the Cranio Care Bears for sending us a wonderful care package to help us survive our stay in the hospital after surgery! If you would like to donate to the Cranio Care Bears’ care packages, you can send them something from their Amazon wishlist.  

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One Response to Lucky To Live in Orlando: Our Craniosynostosis Story

  1. Zach July 12, 2018 at 2:29 pm #

    Hi Elaine,
    It was great reading your experience and I am so glad you had a great outcome! My wife and I are going through the scare now with our 3 month old. We are from Orlando but live in Austin now and currently planning our move back to Orlando. Our specialist here said that our son needs surgery between 8-10 months old so we have some time. We are thinking of moving sooner rather than later and having the surgery in Florida but we do not know the best place to go and I would love to talk to you more about your experience and who did the care for your baby. If you could please email me so we can talk further: [email protected]


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