
Help baby Juliette get a Cranial Helmet
Hello, and thank you for hearing our story.
We were blessed with Twins: Everette and Juliette this past June. As is normal, our babies were born a few weeks premature and have intense medical needs in their first year.
Our son Everett spent a month in PICU for encephalitis meningitis. It was very scary,
but he pulled through.
Our daughter, Juliette is mostly healthy,
except for a significant case of Torticollis
which causes her head to go to the left and therefore a misshapen (flat) head.
If this continues, her ears and eyes can go out of alignment. Juliette’s condition has gotten slightly worse despite some physical therapy exercises and failure of the tortle cap. At 2 months, her Cranial Vol Asymetry (CVA) was between 7 and 10 (manually measured) and at 5 months her CVA worsened to 12.2 (laser measured). On November it slightly improved to 10, but Ideally a child’s CVA should be under 6. As she gets older the window to correct this becomes more difficult.
I am a service member with Tricare, however they refuse to cover a cranial helmet unless it’s needed for post-brain surgery. We hate asking for help, and hopefully our letters to congress will help get this service added, as hundreds of servicemembers are denied this every year.
The cost for the StarBand helmet is $4600 from Children’s Hospital of Atlanta, and there will be follow up visits to come. If you are able to help us with the helmet, we can cover the out of pocket doctor visits. Thank you so much for your support.