RYAN

In late November 2000, our 7-month old son, Ryan, was diagnosed with a condition called Positional Plagiocephaly. In an effort to pass along the valuable knowledge we’ve gained through our experiences, Erik & I would like to take a few moments to share Ryan’s story with you. If you are expecting or have a child under 1-½ years old, this could affect you as well. If you know someone this information may help, please feel free to pass it along…

Erik & I were first concerned about Ryan misshaped head (Erik lovingly teased that he had an acorn-head) and questioned our pediatrician at his 2 month well-baby check up. Ryan had a flat spot on back right side of his head with a corresponding lump on the right side of the back of his head and a bulge over his right eye along with facial asymmetry noticeable in his eyes and ears. Our doctor assured us at that appointment along with his 4 month and 6 month check-up that it would round out on it's own and not to worry. 

Our daycare provider, a former pediatric nurse, knew of our early concern for Ryan's head and the feedback we received from our doctor not to worry. Finally (and luckily so), when Ryan was just over six months old, she mentioned that she hadn't seen any improvement. We hadn't either but blindly trusted the doctor. Our Daycare Provider recommended we seek a second opinion. We immediately began researching the conditions that could be indicative of Ryan’s symptoms. In doing so we came across a wonderful wealth of information through an online support group called CAPPS, Craniosynostosis & Positional Plagiocephaly Support Group. http://wwwCAPPSkids.org/ 

One week later we scheduled an appointment with the well-respected pediatrician our Daycare Provider had worked for. It was immediately apparent to the doctor that Ryan’s crooked little head was not normal and ordered skull X-rays to rule out the more serious condition called Craniosynostosis (the premature fusion of the sutures – soft spots – of an infant’s head), which requires skull surgery to correct. Thankfully, the results of the X-ray pointed to Positional Plagiocephaly.

We are not certain of what caused Ryan’s Plagiocephaly. It may have been due to in utero constraint or developed after birth. A complicating factor to Ryan’s condition was his Prematurity. Ryan was born 5 weeks early via C-section. He spent his first 6 weeks or so sleeping in a bassinet next to our bed in the same position facing me. Now that we know what we know, Ryan was at an even higher risk than a full-term baby with the even more malleable skull of a preemie.

Erik and I were, like most new parents, very diligent in our effort to educate ourselves in preparation for our well planned first born. One of our biggest, and the most well published concerns was SIDS and the "Back to Sleep" Campaign. Needless to say, Ryan was positioned on his back or side for sleeping, as recommended, without a second thought.

The one simple piece of information that we missed and the “Back to Sleep” Campaign failed to clearly mention is to actively reposition the child to avoid flat spots. Whether Ryan’s condition occurred prior to birth or after, this information could have helped Ryan sooner. As a side-note I’d like to mention that the “Back to Sleep” Campaign is a effort that IS saving children and the campaign should NOT be abandoned – just amended to include repositioning and “tummy-time” while the child is awake and supervised. Please continue to put your child to sleep on his/her back!

The good news is: Ryan is a great kid with a great future ahead of him. The fix to his Plagiocephaly should be simple, if all goes well. We opted to actively treat Ryan by placing him in a corrective helmet 23 hours per day. It is estimated that he’ll wear the helmet for about 4 months. He’s been wearing it for nearly two months and we’ve already seen great improvement and look forward to even better results by the end of his treatment. Erik did an awesome job decorating Ryan’s helmet to fit with his racing heritage. Ryan’s helmet does not hurt him in any way – it remolds by encouraging growth in the flatter areas while applying slight pressure to the bulging areas to discourage growth. Ryan doesn’t mind the helmet at all – actually he’ll probably miss it when he’s finished with treatment.

I guess through all of this we learned a good lesson: trust your parenting instincts – they work!

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©Craniosynostosis And Positional Plagiocephaly Support, Inc.2001