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!
