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EVA - looking for some positives

Discussion
Posted by gb
29/01/21 01:19 PM

Hi there! I'm new here after our 7 week old has just been diagnosed with moderate unilateral hearing loss. 

This has come with obivous shock as we have no family history of this whatsoever.

We're still awaiting tests etc. to fully diagnose what might have caused this, and one thing we've read about is EVA.

The main concern we have if it is EVA is that her hearing loss could become progressive and become profound or even worse, bilateral too.

Do any of you out there have any positive stories with EVA and how it hasn't particularly affected or progressed to be worse in your little one's lives?

My wife is particularly worried about EVA at this stage despite us not having full understanding of the cause, so I am looking for some positivity to share with her to keep spirits up just incase that is what we're diganosed with :)

Thanks in advance

Discussion
Posted by pristine
03/02/21 01:00 PM

Hello there, welcome! I've been a member for a while but this is the first time I've posted. I saw the title come through on my email and wanted to offer some reassurance to your family. Both my children are bilaterally deaf, mild- moderate. My eldest was suspected EVA. Whilst I can't offer you positivity about loving with EVA I can say that firstly you are in the right place. Its incredibly hard to navigate the pathways especially when you have a newborn. My eldest daughter was 4 when she 'suddenly' lost her hearing whilst being treated for an ear infection. We used a private audiologist in london and as soon as they suggested EVA I clung to get it. In hindsight I wanted to know WHY she was hearing impaired. She had an MRI scan of her head/ ears to rule out EVA and it was clear. But I've not forgotten the anguish I put myself through playing out all possible scenarios. We also underwent genetic testing and that didn't provide any more insight into underlying causes. I've been told that they are not eligible for any wider genome projects so we've had to accept that we just don't know why. So I couldn't control that, but what you can control is the support system you have for yourself, your wife and child. We've had lots of support for our youngest at a baby/ toddler hearing impaired group at the Elizabeth foundation, we've got good TOD's who work with us and nursery/ school and both girls are progressing well with the listening they have. Hope this offers reassurance that whatever the diagnosis, with the right support it will be ok. All the best

Discussion
Posted by p
03/02/21 01:26 PM

My daughter, who has just turned 4, has bilateral EVA and I can well remember the shock and worry when we first found out she was deaf as we also had no family history. Then more shock and worry when we found out it was EVA many months later.

In terms of her hearing loss I have found that it really does get easier over time. I went to an NDCS event and am learning BSL at college. Personally I found it reassuring to meet people who are deaf and to see that whilst it can make certain things harder, it doesn't mean mean my daughter won't have a full and happy life.

My daughters hearing loss has progressed from mild in one ear to moderate / severe in both. However her audiologists say they have a teenager with EVA that has always had steady hearing. It is different for each person I believe. However a progression in hearing loss hasn't held my daughter back, she has good speech, is learning sign language and is just a happy little girl that loves to play with her friends and go to preschool!

Discussion
Posted by sparkle
03/02/21 01:51 PM

Dear gb,

It must have come as a shock to you and your family and I hope you are all coping okay. NDCS is a great place for support and information.  We have been to some of their courses and our daughter was looked after by their childcare providers in another room with other deaf children which was great.  We made friends with a couple who by coincidence live near us and our chidlren are the same age!  It's so lovely for our daughter to have other deaf friends and we are lucky that there is another child at our daughter's primary school who also has cochlear implants and they are great friends too.

Our daughter had bilateral moderate hearing loss and wore hearing aids.  We did some tests to find out what caused her to be deaf but the NHS only does a few tests.  At that time we didn't do the MRI.  

However  when she was three she had a very minor bump to her head at preschool with no mark etc but she lost her hearing.  We later discovered from an MRI scan that she has Pendred Syndrome and EVA.  So although the bump to her head was not serious she must have hit the side of her head and this caused her to become completely deaf.  

If your daughter does have EVA it is important that everyone who looks after her is aware that any bumps to her head can cause her to lose her hearing.  Our daughter went on to have cochlear implants a day after her 4th birthday.    This has been amazing and she can hear quiet sounds and is doing really well.  She also gets lots of support at school.  She is a summer born baby and we were able to defer her schooling for a year so that she started Reception a year later which gave her time to adjust to the cochlear implants and make up for the period of time when she had no hearing before the operation.  She has an Educational Health Care Plan at school to ensure she gets the support she needs.  She has a TA with her and they use a radio aid.  With EVA children can start off with hearing aids and go on to have cochlear implants as their hearing deteriorates.  There is a section on the NDCS website with more information about EVA.  

Our daughter doesn't stop talking and loves dancing and listening to music.  With cochlear implants her hearing will only get better whilst ours will deteriorate as we get older.  The technology is improving all the time and she can even hear when she goes swimming as she wears one cochlear implant with a special waterwear covering. 

Before her operation she was doing really well with bilateral hearing aids and we took her to some sing and sign lessons and do some basic british sign language.  She is also very good at lip reading.  

There might be a local deaf group that you could join which could be supportive and fun.  It really helps to meet other deaf children and families.

Discussion
Posted by sjf
03/02/21 02:06 PM

Hi 

Our daughter has hearing loss in both ears from birth, left is severe and right is moderate. She wears hearing aids and was diagnosed at 10 with EVA. We were completely thrown at the time, but have had fantastic support from her consultant and audiology team. Looking back, I am relieved that we had ten years of not worrying about her banging her head and at 10 she could take an active part in making decisions for herself and reducing risk.

She is now 14 and is fairly active. She chooses not to take part in contact sport but has enjoyed tennis, running and other low risk activities. She also has gone to gymnastics and led a very active Scouting life.

She has had a radio aid to help her at school since Yr 1 and now at 14 is in top sets for nearly all of her subjects, so her EVA/ hearing loss hasn't held her back. We have been learning BSL and are now at level 2 to give her additional tools if her hearing does change, but so far it has remained pretty consistent.  

I think the scary bit for us was the initial diagnosis at birth and then again when diagnosed with EVA. It’s hard not to google but unfortunately you will see lots of stuff all at one go and we found it was gentler to be led by the team at the hospital. Wishing you and your gorgeous girl much love and support xx


Discussion
Posted by ja
03/02/21 09:57 PM

Hello, 

Our daughter is nearly 8 now, and like the rest was diagnosed at birth as deaf. We also were shocked and took a while to come to terms with it, along with constant tests. She has had hearing aids since 18months old and her tests currently have been pretty consistant, we do occasionaly see drops when she is congested after colds but then it returns to normal again. We went on to have an MRI scan when she was around 4years, which confirmed she has EVA. 

Our daughter has had great support since birth from the TOD, and we have tried a few different equipements inc radio aid, compliot and now on a Edu mic. She has good speech, lip reads well and is learning BSL. 

She is in mainstream school and manages well generally in the classroom, struggles a little in the playground, so she tell us. However now she is getting older the smaller friendship groups are forming and some of her close friends even learn some BSL with her.

We have looked and are still considering cochlear implants, as she qualifies for them but with her case we still have some levels of hearing, especially in her left ear. So this is a hard decision for us since both ears for children now have to be completed at the same time. 

NDCS we have found very useful, especially for borrowing/trying new equipment. 

Discussion
Posted by nemofish
04/06/21 12:10 PM

Hi, coming late to the thread as only just got round to realising the community was here! 

My nearly 13 yo daughter was diagnosed at 2.5 yo with EVA (via CT and MRI) and I would agree with the poster above who said it does get easier with time. She has bilateral moderate loss with slightly differing characteristics across the frequencies. We were paranoid about bumps to her head when she was young and she used to wear a cycling helmet at play time. Her nursery, EYU and KS1 were all fantastic with her and explained to the other children why she was wearing it. We have also not flown since the diagnosis as we know of a case where the hearing loss was instant after a long haul flight with turbulance. 

Her hearing has remained at the same level as when she was diagnosed with small fluctuations and her speech progressed quickly once she started wearing aids. She is not an overly sporty girl but she does play netball and badminton, we get her excused from contact sports. Although nervous to start with, we also take her to theme parks where she loves things like log flumes and some of the more tame rollercoasters. As she has grown up, it has become easier since she is less likely to fall over and can move herself out of harms way. 


Discussion
Posted by girlmum14
24/06/21 09:45 AM

Only just realised this was here ! my Daughter was diagnosed with Unilateral hearing loss I bet right ear due to EVA at 8 weeks and then had a mri to confirm at a year old ! She's 3 next month and is doing brilliantly in regards to speech , she is the youngest of 4 but is definitely the chatterbox of the family and is speaking more at this age than my other children did ! 

Her hearing loss is only Mild atm but I'm of the understanding it can be progressive , she isn't currently aided but with her starting nursery FS1 i will see how she gets on at school! She goes to dance Classes and is honestly like another other child IMO! The only issue with have is that she gets episodes of Vertigo which is horrible and she doesn't sleep !but we are working on the sleep front ❤️