Marissa has Down Syndrome and a repaired heart defect. She had open heart surgery when she was 4 months old at the Cleveland Clinic in Ohio. As a result of her low tone (a characteristic of DS) and her congenital heart defect she was a very weak baby for the first 5 months of her life. She also has a condition known as torticollis which impedes her movement towards the left. It is because of these various factors that she developed a flat spot on the back of her head, known medically as Plagiocephly.
I have been attempting to treat the flat spot with physical therapy, early intervention, and head massage in the home. After receiving a referral to a cranial facial specialist and diagnosing her plagiocephaly as a moderate case, we were prescribed positional helmet therapy. If not corrected, Marissa could develop spinal complications or vision problems so we feel very strongly that this needs to be corrected.
We were all set to go, signing in at the orthotetics desk and I was told that our insurance didn't cover the therapy and that it would cost us $3500 to go through with the treatment. Plagiocephaly has a limited window of opportunity in which to treat it because it is only effective while the head is still forming. Essentially, due to this limited window, we had to act quickly and move forward with the treatment.
We made the 1 1/2-2 hour drive back to University of Chapel Hill yesterday to have Marissa fitted for a helmet. She will need to wear it 23/7 for 3-4 months. She gets an hour everyday for hygiene. She will receive her helmet on Sept 18th.
It is weeks like this that I feel like I have to be "on" 24/7 to advocate for Marissa. From being told that she's not eligible for speech because she's not hearing impaired (forget the fact that she has cognitive delays and impairments) to a $3500 hospital bill that's considered to be cosmetic. I wonder why the system makes it so difficult to obtain the services we need for these little ones. It makes me all the more concerned as to what will happen if I am not around to fight for her. Bottom line, I shouldn't have to be fighting like this. Not that I think we are entitled or anything but research shows proven results with early intervention, shouldn't it just be common sense to provide it to special needs kids in order to help them become successful, independent individuals in the future?