subject: Coping with Flattened Head Syndrome: One Mother's Story [print this page] Coping with Flattened Head Syndrome: One Mother's Story
One frightful night I cradled my baby in my arms and listened to her rhythmic breathing. I cupped my hands under her tiny head and cooed. Then, I noticed it. Something was wrong. Her head did not feel smooth and round like my other babies had. The shape of Abigail's head somehow felt different in each hand. I lifted Abigail up to get a closer look and make sure I wasn't just a paranoid mother imagining things. Abigail was 3 months old at the time and no, I wasn't imagining things!Others might not notice this, but I could tell Abigail's head was flat on the back, towards the right. The front was round and curved, but the back of her head was flat. Was I getting carried away, or were her ears uneven, too? I went to my pediatrician in a panic and explained what I saw. He examined her and tried to calm me down, but I was still nervous. He said that Abigail's head would reshape itself in a few months. He prescribed more tummy time and to reposition her at night.I did as the doctor said but saw no improvement. I tried positioning her on her right side and then positioning her on her left side. I even bought an "Exer-saucer" so she would be motivated to play while upright. I listened to her scream in frustration when I placed her on her stomach -- not one of her favorite positions I quickly learned. I did whatever I could to keep her off her back. Nothing changed.I was frightened and concerned. Was everyone around me taking this too lightly? I pictured my beautiful little girl growing up with a deformed head. If there was anything I could do to help my baby, I was willing to try.That's when my professional insights kicked in. My two decades as an orthotist, fitting supports and braces (no, they're not just for feet) taught me the wonders of the right splint or appliance, and most importantly, about my right to seek a second opinion. I asked my pediatrician to refer me to a pediatric neurologist and promptly made an appointment.Back Sleeping: A Caveat for a LifesaverThe neurologist, Dr. W., said that Abigail had a condition called positional plagiocephaly. In other words, the bones of her skull were not the usual, symmetrical shape. This was something I was extremely familiar with as an orthotist, but as the mother of a child with this diagnosis, it shocked me. Abigail's condition was a common problem with a simple solution.First, a lesson in physiology: The skull feels like one large hard bone, but it didn't start out that way. Mother Nature's wisdom restrains the skull bones from joining together so that they can slide over each other in the birth canal. The fontanels, or soft spots on a baby's head, are there until the bones seal together.Since 1992, when the National Institute of Health created the "Back to Sleep" campaign, the number of babies with positional plagiocephaly has been on the rise. To prevent sudden infant death syndrome (SIDS), parents were instructed to flip babies on their backs for naps and nighttime. In due course, occurrences of SIDS dropped by 38%. However because babies now spent more time on their backs, cases of positional plagiocephaly, or poor positional molding, rose by 70% within the same time frame.Furthermore, the '92 back-sleeping campaign coincided with the rise of portable car seats used as baby carriers. Between the two, babies were spending more and more time with their heads against flat surfaces and babies' soft skull bones were paying the price.Shockingly, when the first wave of "Back to Sleep" babies turned up with a higher incidence of plagiocephaly, doctors reached for their scalpels instead of other measures. They misdiagnosed babies as suffering from cranio-synostosis, a serious condition that occurs when the bones of the skull fuse together too soon --cramped brains don't function as they should. Risky four-hour surgeries were unnecessarily scheduled and performed to resolve the problem. In the Children's Hospital in Denver, 215 babies underwent the surgery in one year. Once the correlation between back sleeping and positional molding was made, the numbers plummeted. Since then, surgeons in the same hospital performed the surgery only a small fraction of that.Baby Helmets HelpDuring Abigail's neurologist appointment, Dr. W. prescribed a special helmet, also known as a cranial remolding orthosis. The helmet, made of ultra-light plastic and other state-of-the-art orthopedic materials, guides the baby's head in a controlled growth to a more rounded shape. In order to benefit from the therapy, a baby has to wear the helmet 23 hours a day for 3 - 4 months.After a week of wearing the helmet, which covered her forehead and the back of her head with an opening at the top, I could feel Abigail's head returning to normal. My relief made me want to shout the news from the rooftops.A Prescription for Greater CompassionAfter encountering dozens of curious onlookers, I realized that the condition was, in fact, a special gift to me. Because of my personal experiences, I could now share authentic empathy with my patients, and offer them hard won, heartfelt answers to their concerns.After three months, Abigail didn't have to wear the helmet anymore because her skull was deemed "nice and round." Abigail is older now and when I show people pictures of when she was a three-month infant, no one can believe the difference. That simple, plastic helmet worked wonders.Since then, I have fit numerous babies for their helmets. I can relate to frantic parents because of my own experience. During the initial fitting, I spend more time calming nervous parents than soothing the baby! I feel confident reassuring parents that the helmet works wonderfully because I know my own baby did so well with it.What I Wish I had KnownI will now offer you the lessons I've learned from this experience, as both a mother and as an orthotist.Speak to your doctor...ask questions. Practically every parent I've met who has a child with a misshaped head tells me that they noticed it right away, but didn't know where to turn. Your pediatrician or a pediatric neurologist is a great place start. They have answers! Don't wait. With helmet therapy, time is of the essence.Make sure your practitioner is accessible. When I make a helmet for a baby, I give the parents my cell phone number and explain that I treat these babies as if they were my own; the parent may reach me at any time during the "therapy" with any concerns.Choose an orthotist with an office that's convenient. Because a baby's brain and skull nearly double in size during the first two years of life, the helmet needs to be checked every 10 to 14 days and is often readjusted. You want this to be a pleasant and convenient experience, not a hassle.The helmets actually look pleasant : Some parents are very worried about the aesthetic look of the helmet. For this reason, I create helmets with fun, colorful designs such as bows and flowers for girls and trucks and planes for boys - laminated onto the surface.Though it's scary to see that your baby has a head that doesn't look quite right, it is something that can be fixed. If your baby's head is flat or bulged on one side, it needs to be taken care of immediately, the sooner the better. Take your baby to the pediatrician and explain your concerns and then get him fitted for a helmet as soon as possible. Remember.... it's a short therapy for a lifetime result!
