During my pregnancy with Lily, I always carried my her on the right side, so much so that my belly even looked lopsided! When she was born, she favored everything right; she would gaze at her right hand, she would only look to the right and she preferred to lay with the right side of her head down. Needless to say, I was not surprised to learn she had developed plagiocephaly on the right side of her head.
Plagiocephaly is basically a flat spot on your child’s head. It is very common and very treatable. During the treatment process is where we were introduced to the helmet.
I was not afraid of the helmet, I was not afraid of the way people may stare at my daughter wearing the helmet or even what people might say to me about the helmet. In all honesty, it just did not bother me at all and I was excited and ready to get Lily’s helmet and begin the process of re-shaping her head.
Here is how our quest for the helmet begins:
Lily was 3 months old when her occupational therapist began measuring her head. She would do this once every two weeks and by the time Lily turned 6 months old we had all the necessary paperwork to submit to insurance for her helmet. We began seeing a prosthestics doctor who scanned her head with equipment that made her look like a space alien! This new way of scanning is pretty cool as it does not require making a mold of their head but rather scans their head with what looked like a barcode scanner you would see at your local retail store! He also concurred that she would benefit from a helmet and filed the required paperwork.
After meeting with the prothestics doctor, it would two weeks and we would have the helmet. Well 2 weeks turned into 3 months! I will spare you the extremely boring details of all the paper-pushing bureaucracy that so badly dropped the ball here.
Lily has a couple hundred “aunts & cousins” from all over the world that have been following her life, dating back to the day I found out I was pregnant. Upon receiving the news that Lily’s helmet was finally on the way, we were flooded with stickers & bows to dress up her helmet!
The day the helmet arrived, I was so excited. As the doctor put the helmet on Lily, she fussed a bit but was okay. He adjusted it to fit and we were out the door. There is a warming up period when you first begin wearing the helmet, a few hours a day, working up to wearing it 22 out of 24 hours a day. Armed with her new helmet, an informational packet and a Styrofoam head of my daughter (yes, very cool!) we were ready to begin this journey.
Here is where we unknowingly crossed the state line and entered Helmet Hell.
We lasted 2 hours. As I looked at my daughter, I noticed that her left eye looked smaller than her right and like it was being pulled. She also was becoming increasingly upset over the helmet. I called the doctor and we went back to get it re-adjusted... and re-adjusted... and re-adjusted... and yep, re-adjusted. We have had the helmet for 1 month and have been back 4 times. She has maybe worn it a total of 24 hours this month.
I have seen several other children wear helmets and Lily’s helmet seems different. Her helmet moves while she plays and ends up covering her ear and her left eye always looks smaller than the right eye and pulled. The worst thing her doctor said to me was that any pulling of her face could cause permanent facial disfiguration.
We go in again this week for yet another adjustment... I have lost my confidence and trust in this helmet. No mother wants to doubt what they are doing for their child, but here I sit, conflicted.
My daughter has Down syndrome and I will never be able to "cure" that. Plagiocephaly is something I can "cure." I want this to work so badly, to save her from having one more little thing to deal with as she gets older. However; an imperfectly shaped head is preferable to a disfigured face! Her doctor continues to attempt to reassure me that she will be fine but I am having trouble finding my way back to the place of excitement and enthusiasm I had once felt so easily.
‘Lily is the light of my life and by far the best thing I have ever accomplished. She took a long time to get here but perfection takes awhile. Lily is a beautiful, fiery, funny, intense and determined little girl and I am having a ball figuring out how to raise this kid! Oh, by the way, Lily has Down syndrome.’
The Buddy Walk is an opportunity for anyone and everyone to walk - or support a walker - and raise funds for the Down Syndrome Association of Tulsa and the National Down Syndrome Society.
Last year alone, over $10.5 million dollars was raised nationwide for local programs and NDSS’ advocacy programs that benefit and serve people with Down syndrome and their families through the Buddy Walk.
Help show the world that Spencer and others with Down syndrome are more alike than different!
Please click the image to sponsor our team. Thank you for your supporting Spencer's Sidewinders in the 2012 Buddy Walk!