Do you know the cause of your child's hearing loss?

[katiegolightly]

Our 16 week old daughter has a moderate sensorineural hearing loss in both ears. We've started having various investigations into the potential cause and we've been warned that often less than half of investigations unearth a reason.

Anecdotally, what are your experiences with finding a cause of your child's hearing loss?

We suspect it's genetic as my husband's cousin also has a hearing loss and we had an uncomplicated pregnancy & birth at term.

Also, if you know it was genetic, did it make you feel differently/negatively throughout subsequent pregnancies 'waiting to hear' if it was going to be the case next time?

Bump

This isn't something I have experience with but I would check out the NCDS website especially the discussion forums I've used them a lot for advice about conductive hearing loss and glue ear and its been very very helpful

I'm comming at this from completely the opposite direction. I have a friend who is deaf, as is her husband, her parents and two of her four children.

In her family deafness is normal, it's the two hearing ones that have been a new experience.

I'd second the NDCS - they have lots of information and loads of things for children too - camps in the summer with activities, or drama.

Do you need to know the cause? If it is genetic will that stop you having more children? If no cause is found will that stop you having more children.

For what I know about hearing parents who discover their little one is deaf / HI, there is a period or mourning for the little girl you had. But yuo still have your little girl, you just found out something different about her.

Jodi Picoult has a scenario - given to her by the mother of a child with Aspergers

Wanting a child is like wanting to go to Rome. You read anout Rome, you dream about visiting Rome, you learn some Italian, you get recomendations from friends. You fianlly get on that plane to Rome and you are so excited.

But when your plane lands you are in Paris, and you can't get to Rome. Everything is wrong. Nothing is how you expected it to be. You don't know a word of the language, you don't know if you will lie the food, this is not your dream.

But than, after a few days you realise Paris is beautiful. There are flowers. The food is different, but good and eventually you realise you don't actually want to go to Rome at all.

I'm not in your posiition, I do not know how I would react if I was. I hope you discover Paris is beautiful.

My daughter is 23 months and has what we hope (and professionals predict) is a temporary hearing loss in her right ear. It's been caused by recurrent ear infections which caused 10 burst ear drums between 8 months and 16 months. We (they) think the problem is with her mastoid bone (?) and she should grow out of it. Fingers crossed!

Thanks everyone. Reason I ask is that we are keen to understand why as part of the process of 'coming to terms' with it, although I have to say that has almost all faded - it's not something we give a thought to now. And 'coming to terms' hardly feels like the appropriate phrase now. So much so if I'm feeding her in public and I have had people stare, I get a bit huffy at them staring at me feeding - I suspect people are often curious to see such a small baby with hearing aids on reflection, but it's just that we don't even see them now.

It doesn't change her at all, she is not and never has been less than we hoped or dreamed. The sadness has been more about things that we know will be, firstly, different for her and doing everything we can to understand how she hears quality / quantity (if you like) and what we can do to make sure she always has the very best hearing she can. And secondly, difficult for her. Nobody wants their child to face additional challenges - but that is now par for the course.

So yes, I ask because I'm a curious girl . Her audiologist tells us that fewer than 50% of people they see find a cause. Whilst (I believe) it's genetic not all genes that cause hearing loss have been identified so we still may not know. We don't need to know, and it wouldn't stop us having any others but I guess some degree of mental preparedness is always beneficial. Whilst we are very happy with handling the situation now, the initial discovery was of course a shock and to understand how others have experienced this for subsequent babies would be quite nice to read about.

I'll have a look on NDCS again but with all my various trawling through it I've not seen anything posted - I should probably reach out to some of the parents of HI kids forums though.

Thanks for sharing your stories too!

I've got 2 deaf children, we didn't think my dd was genetic as no family history and a rarely genetic type of loss, then my ds2 arrived 3 months ago ! So the answer is its never what you want for your children but we have such hope as our dd is at mainstream school and has above age appropriate language. They are both profoundly deaf and she has bilateral implants and the small one will have the same around 10 months old.

We had everything in place during pregnancy should our back luck happen, so we have already had numerous audiology, surgical and therapy appointments for the baby. Does that help ?

Yes, it does! We've talked about assuming it would be the case regardless - to me that seems simpler than thinking '1 in 10, or 1 in 4, we may get lucky...' etc etc. Maybe there is an awful lot to be said for having a sibling in the same situation who can share their experiences. And part of me even feels that it's all I know now too - a hearing baby would be a different experience for us too!

Fantastic that your LO is at mainstream school and doing so well, Hatchypom - I've been incredibly impressed with all the NHS services we've had on offer - speech therapists at 2 months!!

For us, DS2 does have a chromosome abnormality which was discovered two years after discovering his hearing loss.
He did have other health issues too hence the investigations in the first place.

He is just himself though and like you said not any less than we hoped for, and I've learnt an entire new language in makaton signing.

All the best with your little girl.

Not my DC but me. I have a moderate-to-severe sensorineural hearing loss which turned out to be Usher syndrome (type 2). Very rare so unlikely that's your DD, and I expect your doctor will refer her for an eye test to rule it out.

I think hearing aids take a while for parents to adapt to - longer than for their child. They are really only glasses for the ears. With this early intervention and your support, your DD will flourish and achieve. She will have a perfectly 'normal' life. She won't be Deaf in the sense of using sign-language etc. When she's an adult, very few people will even realise she has a hearing loss.

You sound like a lovely mother. I had one too. Your DD will do well :)