To wonder how to help this little one?

[HopeLight]

details have been changed to avoid outing

So my nephew has a beautiful 8 month old baby DS. The baby is a cute, sunny little soul and, as far as I am concerned, perfect in every way. The thing is, the baby is definitely profoundly deaf. He is very alert, and will follow you easily with his eyes, but does not respond at all to sound. If you ring a bell next to his ear? Nothing. A dog barks loudly behind him, or his name is called? No response.

His parents love him very much. They proudly tell people that he's a fantastic sleeper, that he will sleep through any noise. He is clean and fed and loved, but they do nothing about his hearing. He failed his newborn hearing screening, so naturally they've been sent appointments to get him screened again, but they always conveniently find a reason not to go.

When I gently suggested to nephew and his wife that it might be worth taking their baby to get his hearing checked, they were incredibly defensive, insisting that he can hear, despite there sadly being no evidence of this.

The problem is, babies need exposure to communication (be that speech, sign language, picture exchange system ..etc) for their brains to develop properly: . Experiencing limited language/communication, let alone no language/communication is a preventable environmental cause of low IQ. Raising the fact that their baby can't hear with my nephew and his wife clearly didn't work, so is there anything else that can be done for this little chap?

It would just be really sad to sit back and watch this little chap experience completely predictable and preventable developmental problems as a result of the fact that his parents won't get him the support he needs to thrive

I know someone who has just been through this however it was just the one ear and because they wouldn’t follow up apps they were challenged with SS.

Oh that's so sad. That poor boy will be affected for life if they keep delaying his access to communication methods and to further tests to see if he would benefit from aids etc.

I'm not too sure what you can do. Possibly steer them towards songs with actions, using baby sign language. I had a check from the HV when DS was 9m but that's not universal and they can decline.

How often do you see them? Are your nephew's parents around and involved or his partner's parents?

Call social services. If they have missed appointments to get his hearing tested again it's a concern.

I would try once more to have a serious chat with whichever of the couple you think is the most receptive (try and get this one alone) and make it absolutely clear what they need to do. If there's no change I'd report to social services.

I think you need to speak more clearly to them, rather than gently suggesting. He failed his screening - which does not mean he has permanent or profound hearing loss btw - many babies who fail the test have normal hearing - and he needs to see an audiologist. Tell them they may well be correct that he can hear, but he needs to be tested to find out what is going on.

Also I hope you aren't constantly "testing" his hearing and looking mournful. Nobody knows what his hearing is like at this stage.

@TheYearOfSmallThings I know children can fail the newborn screening and have normal hearing, but he failed multiple times (he was born early, so in hospital for a while) and the hearing loss is so obvious. For example, someone will coo at him from slightly outside his range of vision, and he'll continue happily staring at something in the distance and not notice them at all, yet the moment he can see them his eyes will lock straight on to them. People who visit can tell something isn't right, but everyone knows how much they adore their son, and is worried to raise the issue. If there's a loud sudden sound (i.e: someone beeping their horn outside) a normal baby would startle, but nephew's DS doesn't, and sadly never has.

I think everyone is so glad that he made it, and love him so much that they're kind of hoping that, if they pretend everything is fine with his hearing, then it somehow will be.

I've never done anything to check his hearing in their line of vision, that wouldn't be kind. The hearing loss is so bad that it's obvious to visitors, who are confused by the fact that the baby is 'ignoring' them

You need to call social services. This is neglect.

I would say it directly. That there's a hearing issue, as they've been advised, and they need to follow up on appointments.

Beyond that I wouldn't do anything, as they are already in the system & any further checks will address this again.

What about your nephew's parents? What do they say?

OP - in the kindest possible way, I think you should just tackle this head on in the most empathetic way you possibly can. They may not respond well in the moment, but it may be the push they need, or they may come back later with a different response.

Make sure you say that you’re concerned about all of them and that you only want to be supportive. However, X and Y are your concerns and you know they want what’s best for their precious little boy and want to help them navigate the situation.

You don’t say if your nephew’s parents are still around - if so talk it over with them if you’re close. If they aren’t around you can say that you know your brother/sister would be saying the same if they were here to do it.

You don’t say if you have children but, if you do, lean on that a bit “I know how hard it is as a parent etc etc”

You are right that it’s important to deal with this early. In cases of sight loss, if a baby isn’t treated immediately their brain cannot form the neural pathways which allow them to see, even if the physical problem might be solved later. I am not a doctor and don’t believe it’s quite the same with hearing, but early intervention is still crucial. Cochlea implants have the best success rate when implanted before the child is three. Plus also there are things like signing, which your DN and his wife will need to practice themselves in order to support their baby with. They want to try and stay ahead of him and his development, accessing support themselves, so they can support him - not be playing catch up when he is ready to communicate and none of them can understand each other.

Do as much research as you can so you can signpost them to useful resources. This might be a good place to start:
https://www.ndcs.org.uk/
The GOSH website also has a useful section on audiology and cochlea implants etc.

Talk to them at a quiet time - when the baby is sleeping and they are not distracted. Tell them you love them all. Offer to attend appointments/provide whatever support you’re able to. Whatever happens follow up with an email linking sites they might find useful and let them know that whatever they decide to do you love them all.

there’s no point everyone pussyfooting around them - sometimes love is telling it like it is, but with compassion and empathy (and bearing the brunt of their upset initially if need be).

Good luck 💐

Can you start learning some sign language yourself? And use it when baby is around. Even just a few signs will help baby and will show the parents that hands can speak.