World Plagiocephaly Awareness Day

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Did you know that April 4 is World Plagiocephaly Awareness Day? 
When Linus was born, he appeared to be missing part of his skull bone.  It was concerning, but it was the least of our worries dealing with a 24 weeker.  If you look at early pictures of Linus in the NICU, you will notice a flap of loose skin at the top of his skull.  Miraculously, the bone grew in by the time he was discharged three months later.  I was glad to have one less thing to worry about.  I thought Linus would be in for years of protective helmets and reconstructive surgeries.  About a month after we brought Linus home, I started to notice that the back of his head looked flat. 
The flattening worsened as the months went on and I brought up my concerns to the pediatrician at Linus' six month well-visit.  The pediatrician evaluated Linus' head from the top, sides, and back to front. Misalignment of the ears, jaws, or eyes or asymmetry in the face may be signs of Plagiocephaly.  The pediatrician saw significant asymmetry, so Linus was referred to a trained specialist to measure the extent of the asymmetry.  The specialist took a quick and painless scan of the Linus' head to determine the extent of the asymmetry. Specific measurements were recorded using a scanner (in Linus' case, a STARscanner) which produced 3D images of his skull. This information was used to create a custom molded helmet specific to Linus. Repeat scans monitored progression of Linus' treatment.
Linus was found to have Plagiocephaly and would require treatment. Plagiocephaly is a diagonal asymmetry across the head shape. Plagiocephaly particularly describes a flattening which is to one side at the back of the head and often times there is some facial asymmetry.  Abnormal head shape is a common finding at birth and may be the result of positioning in the womb or difficult passage through the birth canal. Usually this resolves in the first six to eight weeks of life. If this persists longer, it is considered Plagiocephaly.  Often, Plagiocephaly is caused by the inability of the infant to turn their head in one direction due Torticollis, a condition where the neck muscles on one side are tightened or shortened. This causes the baby to always apply pressure to the same side of the skull causing it to become flat.
Treatments for Plagiocephaly range from repositioning of babies below the age of five months to a cranial molding orthosis or helmet. In mild cases, repositioning usually resolves the Plagiocephaly and the skull rounds out on its own. Treatment usually takes the form of reducing the pressure on the affected area through supervised tummy time throughout the day.  Also, repositioning the child's head so that the rounded side of the head is placed against the mattress, repositioning cribs and other areas that infants spend time in so that they will have to look in a different direction to see their parents, or others in the room, repositioning mobiles and other toys for similar reasons, and avoiding extended time sleeping in bouncy seats, swings, or other reclined seating which is thought to exacerbate the problem.  Moderate to severe cases require treatment with a cranium molding helmet.  The helmet works by providing painless total contact over the prominent areas of the skull and leaving voids over the flattened areas to provide a pathway for more symmetrical skull growth. Treatment generally takes three to four months, but varies depending on the infant's age and severity of the cranial asymmetry.
Linus' plagiocephaly was moderate, so he required a cranial molding orthosis.  The color options seemed endless and I was able to select a cute blue camouflage design for his STARband.  He was also evaluated by a physical therapist through Early Intervention and was diagnosed with Torticollis.  Linus qualified for  weekly physical therapy sessions, where he was exercised and stretched and most importantly, we were taught different ways to work with him to resolve the Torticollis.  For children like Linus, with Torticollis, it is important to have plenty of supervised time on their tummy, lying on their side, sitting, and supported standing.  His environment was set up to promote exploration toward his non-preferred side. and by minimizing the use of bouncy seats, swings, and other reclined seating. 
We had lots of fun while Linus was wearing his helmet.  We photographed him daily and placed him in fun and whimsical situations through the magic of the computer and a tech savvy husband.  Linus was the inspiration for me to start blogging regularly.  Every day I was excited to post a picture of Linus doing something fun that required a helmet, such as bicycling, rock climbing, or being shot out of a cannon .  One of my favorites is this picture of Linus, on his 23rd day in his helmet, dressed up as a pilot. 
Linus wore his helmet for a little over three months.  Finally, last May we brought Linus for his final appointment with the orthotist.  The scans revealed that the helmet and physical therapy had done its job.  Linus had officially graduated.
I was looking for a way to display the helemt in Linus' room.  I didn't want to just stick it in the closet.  It had been such a big part of our lives for those three months.  I had the idea to bring Linus to Build A Bear as a celebration, as well as to make a new friend who could now wear the helmet.
Now Linus' helmet had a new home, proudly displayed on a shelf in his room.
If you have any concerns about your baby's head shape, call your pediatrician for an evaluation.
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