The Last thing i expected when i found out i was pregnant a third time,was that anything would happen. Both Hayden & Blake where smooth sailing pregnancies (apart from the horrible aches & pains) but i never had any health problems otherwise. So of course i never thought i would this time round. Savannah was first picked up for hearing at the Newborn screening test they did in the hospital. (Mind you 14 mths earlier they never did the testing because Blake never had it). Savannah had an "inconclusive" result. The lady that was testing savannah said there was probably nothing to worry about because lots of babies fail from them being unsettled. I brushed it off & didnt think anything of it. A week later we can back for the re-test & once again the lady could not pick up anything from either ear...."inconclusive" once again. We where then referred onto the Audiologist for further testing.
Our first Audiologist appt was terrible, Savannah was super fussy & i was frazzled from the stress of her fussing & the possability of another fail. The test seemed to take forever because she was so unsettled. Finally the Lady went ahead & told me that she was getting great responses from the left ear, but nothing at all from the right ear! Tears of frustration,uncertainty & sadness streamed down my face.
She did one final test to check for fluid & both ears came back positive. At this point she said it could be just the fluid, but we needed to wait another 5 weeks & be retested to make sure. As if i could wait 5 weeks? I sent myself crazy thinking the worse, and the what ifs???
5 weeks tunred into a lifetime & over this period we noticed savannah wasnt responding to her name or loud noises that we where making. Of course i was in complete denial & refused to believe anything was wrong. How could anything be wrong with my baby that was so perfect & healthy???
21st May The day of her final hearing tests & i was a wreck. My mum had to take savannah in for her testing, as i was too stressed to sit there trying to keep her calm. Basically more or less i knew something was wrong but didnt want to admit it or hear it. They where in there for what felt like forever, finally they came out & my mum told me that savannah was deaf. After that i broke down. I have never felt so heartbroken & upset in my life. I think it took me 2 days to stop crying everytime i looked into her eyes. That precious innocent face just stared at me & smiled. she had no idea what was going on.
I have cried so many tears thinking about how i could have changed this, or how i could have prevented this? The fact that i will probably never know what happened will probably live with me forever. I felt guilt because i didnt want her to have to be challenged in life. I wanted things to be easy for her.
After her diagnosis I just couldnt bring myself to understand why. No mother ever wants to hear that their child has something wrong with them. We all want our kids to be perfect & live normally.I knew she was still perfect, but it upset me that her life will be a challenge after challenge & that she will never know what its like to enjoy the simple little things in life. I feel sadened that she will never hear the waves lap over at the beach, or the beautiful sound of birds on a spring morning. Those things are what we would take for granted, but for her they would be precious.
Once i thought i had finally got a grasp of what was going on, i was bombarded with so much information about what was to come for her. but what was to come? Will she have a normal life? Will she talk? I was so worried that she wouldnt be able to talk & communicate & enjoy her life. What did i know about deafness? how was i meant to help her? How will i give her what she needs & still be a good mama to hayden & Blake.
I felt like this would never end. Questions after questions. The one thing i am worried the most about, is that she can talk & listen. I want her to have a fulfilled life & a normal as can be childhood.
Next step was to see the ENT & Eye & Ear Hospital & Australian hearing. The Eye & Ear Hospital asked so many questions about family history, my pregnancy & savannahs general health. With everything i answered they still didnt understand why she was deaf. We where offered genetic testing, but declined because there is absolutely no history what so ever in our families. She mentioned that i may have contracted CMV whilst preg & not have known it, but the likelyhood is 50-50 i guess. So because their is no cause & they are unsure we have been referred to the Eye specialist as well for eye tests. As i found out CMV is a very serious illness in pregnant women that causes deafness in babies..but it also causes ALOT of other problems too. Which is why they need to rule out any Eye problems. Then they discussed her hearing loss & explained to me how the ear worked. I felt extremely stupid at this point because i had absolutely NO idea how it all worked. Savannah has a permanent hearing loss called Bilateral (meaning both) Sensneuiral hearing Loss (SNHL), probably the worse you could have :(
Her left ear is moderate to severe (she cannot hear anything under 65db) and her right is profound (completely deaf).
This would mean she cannot hear normal speech without a hearing aid or a cochlear implant. The ENT said at this stage savannah isnt a candidate for a cochlear as she has some residual hearing in her left. So for the moment we where to be fitted with hearing aides.
On June 16th 2010 Savannah was fitted with her first set of hearing aides...& they are PINK :). Australian Hearing is now our focus point for hearing aids, fittings, new moulds & anything we need for them. Our Audiologist Rebekah is lovely. She has really answered alot of my questions & cleared up alot of things i was unsure about. She has repeatedly told me that with early intervention & alot of therapy savannah could live a full life in the hearing world. This made me feel somewhat better.
Because savannahs ears grow so quickly we are in for new moulds every 13 days. It gets quite full on with all of the appts & going back & forth to them all. Savannah must wear her aides everytime she is awake so that she can get the maximum benefit from them. The more time she spends with them on, the more her auditory nerve is working to keep the brain active for when we start speech therapy. We are lucky that she was diagnosed from birth because it opens alot more doors for us.
Might I add that we are incredibly lucky that the Australian Government fully support & fund ALL hearing aides/equiptment & services to under Children/teens 21years & under for Free. We havent yet paid for anything that she has been through. So i feel very blessed that we are able to focus on savannah & not worry about stress & distractions of where we will get the money.
Since Savannah has had her aides on we have noticed improvement in her ability to respond to sound. At our last appt they had noticed savannah was responding with the right hearing aide in only (this is the profound ear) which is a good thing. It was nice to finally have someone else notice the little things that i was starting to. She went ahead & booked us a test for sound aided & unaided for the 21st July. Obviously i know she will always have a hearing impairment, but i can only hope that the fluid has drained & that she can regain some hearing & have a better chance to hear with the aides.If not then we will work with what we can. My main concern is that the amplification in the aides will be distorting what sound she can hear. Only time will tell with that because if she isnt hearing correctly it will be in her speech. I just have to hold onto hope that things will get better & Savannah will only be stronger from this.
Savannah is now apart of Taralye, a centre for deaf children (http://www.taralye.vic.gov.au) Where she will begin her long road to a hearing life. They are wonderful there. They have support groups, a personal co-ordinator that manages savannah personally & makes sure she is making progress. We are in the progress of making a decision on what we want her to study. At the moment we are heading towards AVT (auditory verbal therapy) this is pretty full on but the results & rewards are amazing! Basically what AVT is, they teach the children to listen to sound & block everything else out, so that they can focus on the speech pattern. Savannah is a great candidate for this because she is so young. They will train her brain to understand sound & keep it working, so that she will talk normally. Its very involved. Otherwise we can take the more natural approach to the speech which taralye are more for. My main concern with that it, that when we hit a bump in the road, she may fall behind too much & then thats when problems start. If the Auditory system is not stimulated enough, cells inn the brain start dying off because the brain thinks it doesnt need it anymore. So then it would be impossible to learn & understand speech.
If we can keep her brain as active as possible from now untill she is 5 we are in for a great chance of speech success.
So far Savannah is on par with normal hearing children, she babbles & talks to herself, which includes a high pitched scream (Im sure she got this from the boys!LOL),she laughs, blows bubbles & is using her mouth to make popping noises. All this would have never crossed my mind, but this is all apart of the brain learning to talk. So far so good, hopefully the aides are working which is why she is still thriving.
So this is where we are at today. About to embark on Therapy & to continue with the aides & monitor her progress. Just praying she will achieve all the wonderful milestones of a normal hearing child.
Her eye appt is 19th July (please pray for some normal results!) & then her re-test for her hearing on the 21st.(improved results would be wonderful!!) I will keep you all updated! xx
