Grayson Michael Barrows Cranio Journey
Organized by: Jordin Fitch
Craniosynostosis (kray-nee-o-sin-os-TOE-sis) is a birth defect in which the joints between the bones of your baby's skull close prematurely. Treating Craniosynostosis typically involves surgery to separate the bones in the head to allow the brain to grow and develop.
My nephew Carson Barrows, the first Barrow's child, was born with this condition. Unfortunately, my sister's husband is a carrier for the gene mutation, and Carson made case #4 in his family. Now, my sister is pregnant again, with baby Barrows #3. After a recent visit to the doctor, we discovered that he too might have Cranio. To find out more about the gene mutation, they have to do genetic testing on the family. This, sadly, is not covered by insurance. My sister is a stay at home mom, and has been fighting with finances ever since Carson was diagnosed and had to have his surgery at the age of 6 months.This was not his only surgery either. Soon after, he had to have a lymph node removed, which may not be his last surgery either.
Cranio is unique and dealt with on a case by case basis. While one surgery went well, there is always a possibility as the child grows, other surgeries could be necessary.
Having another child with Cranio is heartbreaking. I would like to get donations to help support her Cranio journey for the second time. All donations are deposited directly into the family's savings account.
This fund is to help raise money so that the doctors can perform a genetic test to find what gene mutation is causing craniosynostosis or the premature fusing of the bones in the skull, resulting in cranial vault reconstruction surgery to make room for the brain to grow. If these surgeries are not performed, the children may end up with developmental delays in several different ways. These genetic results that we would get, would inform us of what gene is causing the mutation, as well as, any underlying delays that could appear at sometime in their life. These results would also tell us what each of the the chances are of having another baby, boy or girl, with the same birth defect, if we decided to have more children. It will also tell us what the chances are for each child when it comes time for them to have a family of their own and the probabilities of this gene being passed down to their kids. In order to do the genetic testing, it's a simple blood test, and will cost almost $3,000 per child. There is 3 children that we need tested, and if doctors find it necessary, they will want to test the parents too. The sad part about all of this, is that the specialists office said that the insurance company doesn't want to cover the tests. They don't find it medically necessary, and the family just can not cover this cost alone. Please consider donating so that we know what the future may hold for these children.
UPDATE: Grayson was born on October 4th, 2014 and has been diagnosed with sagittal craniosynostosis. Possible surgery in 4-6 months, trying to get in to see Neuro surgeon next month.
You can view Carson's journey at https://www.facebook.com/notes/jena-barrows/carsons-journey-with-craniosynostosis-and-other-surgeries/323619029995
You can view Baby Barrows #3 journey at https://www.facebook.com/notes/jena-barrows/baby-3s-journey-with-craniosynostosis/10150418944804996?notif_t=close_friend_activity
Any Cranio related questions or comments can be directed to miss mama barrow's herself at firstname.lastname@example.org