On September 7, 2014 our precious 2nd child and 1st daughter Hannah Joy was born. I had experienced an uneventful pregnancy and delivered her at term. While in the hospital everything checked out except that her left ear failed the newborn hearing screen. We were assured that this was normal (1 of 10 babies fail their newborn hearing screen) and just to schedule a follow-up test. She had this test 10 days later and failed in both ears. Again, we were told not to worry and to make an appointment with an audiologist. Since Hannah was struggling with colic and I felt no rush to hurry to the audiologist just for them to give her a clean bill of health we put off the test until right before she turned 3 months old.
By this time her pediatrician had noticed her head was not growing like it should and we may need to have an MRI to see if we could figure out the reason (again, no rush from the Dr.).
A week later we visited the audiologist for an ABR (Auditory Brain stem Response) test which she failed. We were told she had moderate to severe hearing loss in both ears. We were floored.
As we were talking through hearing aids, what this would mean for Hannah long term, etc I mentioned her small head size to the audiologist. Since she sees children with various issues besides hearing loss she started thinking the head size and the hearing loss may be related. She called Hannah's pediatrician and asked to have her tested for CMV (cytomegalovirus). The test came back positive.
We were devastated.
There we sat one day after Thanksgiving with a child we were told was completely healthy at birth
and now may suffer with mental problems and delays the rest of her life. We knew nothing about
CMV. So we started researching. We found very little hope on the web, actually completely the opposite.
We struggled through the long, Thanksgiving weekend with only each other for comfort. We looked at our "perfect" baby girl in utter disbelief.
How could this have been missed at the hospital?
Why were we not urged to get an ABR immediately?
Why had I never heard of this virus?
So many questions.
And so many questions still go unanswered to this day.
After seeing specialists and therapists, hearing hopeful news and some devastating prognosis's we came to the point where we had to put Hannah's journey in God's hands. He is the only one who can sustain us anytime but especially at a time like this. Of course we are doing as much as possible to help her with her delays and CMV, but we know it's only by God's grace that she's done as well as she has.
We desire to use this blog as a means of awareness about the virus. For women who are pregnant or thinking about becoming pregnant, or if you know someone who is pregnant. I do not want other families to have to go through what we have gone through.
CMV is preventable, you just have to know the facts.
