Why?

WHY?

Shortly after Dylan’s diagnosis, these questions came.  I had a very normal, uneventful pregnancy.  I took care of myself (besides indulging in my always present sweet toothJ) and did everything right.  So why is this happening to our family? During this difficult time, I was reminded of James 1:17 “Every good and perfect gift is from above” (this scripture is also on Dylan’s door hanger!) It helped to remind me that we may not understand why, but we have to put our faith in God and remember everything is a part of His plan. 

After more hearing test and no changes, we were referred to a genetics counselor at UAB.  Last Valentine's Day, we traveled to Birmingham.  The doctor examined Dylan and he didn’t appear to have any other symptoms associated with his hearing loss (thank you God!)  They sent us over to Children’s Hospital to have his blood drawn.  What a heart breaking experience to watch your 5 month old have blood drawn!! Thankfully, we were done after that, but still no answers.  UAB had started just weeks before our visit, having the ability to test for 66 different types of genetic hearing loss.  Again, technology is such a blessing!! Although we left with no answers, we left with the hope they would come. 

Nearly FIVE months later, we had answers.  Dylan had Connexin 26 hearing loss.  It’s a hearing loss that typically doesn’t progress and isn’t associated with any syndromes.  I still had hope his hearing would improve before this call.   Instead of dwelling on this, we praised God that other than his hearing loss, he was healthy baby and we had the answers we had been looking for!

A little more information on Connexin 26 (Cx 26) hearing loss:

·         Is the most common type of hearing loss

·       Cx 26 is a gene that makes an important protein needed for function of certain cells inside the inner ear

·       Most children who are born with Cx 26 hearing loss have 2 parents with normal hearing and no brothers or sister with hearing loss

·       Parents who already have 1 child with hearing loss, have a 25% chance of having another child with hearing loss

·       Our siblings have a 50% chance of being a carrier for Cx 26

·       Both parents have to be carriers for a child to have the possibility of hearing loss

What a lot of information to take in!!  It was important to us to find out these answers not only to answer our own curiosities, but to help us with treatments decisions.  Children with this hearing loss respond well to hearing aids and cochlear implants. 

With this being the most common form of hearing loss, why have we not been able to connect with other parents? Hopefully, my blog will help us to connect with other parents of children with hearing loss! If you know of someone, please share my blog!

Next up on my blog: The cochlear implant debate!