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4 week old PFB ds confirmed profoundly deaf

(16 Posts)
SenoraSurf Tue 10-Sep-19 21:22:14

My 4 week old baby has been diagnosed as profoundly deaf in both ears. He failed the 3 newborn hearing screening tests and was diagnosed by the audiologist today following further tests.

DH and me are obviously distraught. We've no family history and neither of us know any deaf people.

He has had moulds taken for hearing aids which he will wear but it is unlikely he will be able to hear with them due to his level of deafness.

We're being referred for cochlear implants but don't know if he is eligible until they do an MRI scan to confirm his inner ear is properly formed.

Will ds be able to talk? Listen to music? Go to the cinema? Surf with friends? talk on the phone?

We are so lost.

Sunshinegirl82 Tue 10-Sep-19 21:41:51

Hi OP, congratulations on the birth of your son. I don't have any direct experience of deafness but I wondered if you had been in contact with the National Deaf Children's Society? You might be able to seek some further support.

Best of luck.

moita Tue 10-Sep-19 23:08:13

Hi OP. My DD (now 1.5) was found to be moderately deaf after failing the newborn tests.

I had the same feelings. It's a massive shock. It will get better and yes - your son will do all those things and more.

As mentioned by Sunshine the NDCS are amazing. Has a teacher of the deaf been in touch?

Go easy on yourself. He's still your perfect boy and it's incredible how resilent children are. My DD is a real personality - I wouldn't change her for the world.

Feel free to PM me

maggycool Wed 11-Sep-19 07:52:41

Hi OP. 👋🏻

Our little boy was diagnosed via the newborn screening programme as being severely deaf in both ears. It was a big shock to begin with and I was so scared of what it would mean for his future etc.

He's now two and a half and due to have cochlear implant surgery in the next few months. He experienced a lot of benefit from his hearing aids which is why he's a bit older than he might have otherwise been receiving CI surgery.

More than happy to have a chat if you'd like, feel free to PM me. smile

SinkGirl Wed 11-Sep-19 08:36:00

Congratulations on your little boy OP. I have twin boys, almost 3 - we’ve had multiple diagnoses for one of them who was born with a visual impairment and endocrine issues, he also has ASD and still going through investigations for more, and the other also has ASD.

It’s an absolute emotional rollercoaster having babies and toddlers with disabilities. At times it can feel like the world is ending - you’ll feel anger and sadness and lots of other bad stuff, but there’s also the amazing moments too.

The difficulty is adjusting your expectations and having to think about things that would never normally occur to most parents.

I’d definitely recommend seeking out support groups for parents of deaf children - you will see that those children are living full and brilliant lives, and this will help. Of course there will be challenges that others don’t have to face, but you will all be okay. You will find your own path.

I’ve honestly found that DT2’s visual impairment is the least of his problems - we still don’t actually know how much his vision is affected because he can’t talk or participate in eye tests, but he knows no different and finds his own way to do things.

You will be okay, I promise.

PEkithelp Wed 11-Sep-19 08:39:26

I’m so sorry for this massively shocking news. I’ve taught dead children and they have a very full, fun, communicative lives.
There is quite a bit of evidence that early communication helps all babies. So I would be throwing myself into learning sign language and trying to practise using it even between myself and my partner. This will be okay.

PEkithelp Wed 11-Sep-19 08:39:57

Terrible typo. Deaf children.

rollNsausage Wed 11-Sep-19 08:44:41

I'm a profoundly deaf person who got a cochlear implant.

Your DC can do all these things.

I have three degrees and I'm looking into PHD study.

I work full time and have a good salary.

It's not the end of the world.

Get yourself onto the NDCS website for advice and support.

The sooner your child gets a cochlear implant the better they will be able to develop speech and keep up with their hearing peers, although there are plenty of sign language users who do well also.

You will have to fight for your DC. Don't take no for an answer. Don't let anyone say they can't. Fight for mainstream education etc because specialised education is very poor and offers limited opportunities.

Drop me a PM if you want.

Rachelover60 Wed 11-Sep-19 08:47:21

I'm sorry, I know you are naturally anxious but deaf people are just the same as anyone once they master some techniques. I had a fair bit to do with the deaf, through work, and they can do anything we do, also know a teacher of the deaf who is deaf herself. There is the possibility of cochlear implant in the future, if it's suitable.

Just encourage your little one to lip read from you and your husband and to do what other children do, there's no reason not to. He'll have specialist education which is usually pretty good.

The future is not bad for your son, Senora. I have understanding of how you feel but, honestly, there's no reason he will not grow up fine. Regarding the deafness he knows no difference but if you interact with him, he will understand the hearing world. Be prepared to be amazed and proud!

Congratulations on your lovely baby. flowers wine

Branleuse Wed 11-Sep-19 09:36:09

hi. My brother is profoundly deaf, and no, he cant listen to music and he doesnt wear hearing aids. He cant chat on the phone, but at least now we have the internet and text messaging. We didnt have any of that growing up. You need to learn BSL or at least makaton for now, in order to speak to your baby.
It will be fine. My brother has a rich life and is married to a hearing woman who can sign fluently. He attended a school for the deaf

Branleuse Wed 11-Sep-19 09:36:28

and congratulations on your baby <3

TweetleBeetlesBattle Wed 11-Sep-19 10:18:59

Another parent of a deaf child here. It is a scary time with a deaf newborn and you have a learning curve in front of you. The support you give your child will change at age appropriate levels and with the milestones they reach, as with their hearing peers, it's just that you will need to be more considered in your approach to communicating with him. Your baby will recognise and be able to sign before their hearing peers can speak. The more you do, the more they will learn from you. Put the work in to get the benefit of it and that sounds really sanctimonious and I dont mean it to be but you will wake up one day and not be so tired and so scared and know that your child just needs additional help and you need to get good at providing it.

Mr Tumble is great for engaging with Makaton, and you will have a teacher of the deaf who will help with how to communicate better.

As they get older you will learn more about what works and what doesn't. There are a lot of appointments, but this means someone's looking out for him on a regular basis and that's a huge support. Be prepared for the first shock of seeing a tiny ear wearing what seems to be a massive hearing aid. Ears grow, hearing aids don't. You are going to get some horrible comments from randomers, and you are going to have to advocate for your child from quite small so that he gets the life experiences that everyone else does.

My child likes bone conductive earphones to listen to music which play music through the cheekbone and mean earphones dont squash her hearing aids. Technology gets better all the time, and what is available now will be better again in 5 years.

Right now you have a newborn. Congratulations on your newborn. Enjoy your newborn and all the squidgy loveliness. In three months, start learning and doing the signs for food, drink, sleep, pig, cow, chicken, dog, car, train. When he's one watch Mr Tumble together. When he's two buy yourself a scooter too because he won't hear you shouting stop when you're in the park. Worry about what would be best at an age appropriate level, and adapt together. If your child was short sighted you'd go get them glasses. Deafness is a barrier that is mitigated by the people, attitude and the technology.

And that's too long, I'm sorry, but I wish someone had said it's going to be fine in those early days in a way I could have believed it. Congratulations again.

Rachelover60 Wed 11-Sep-19 13:42:45

That was one sound post, TweetleBeetles. flowers

bagsofbats Wed 11-Sep-19 14:03:00

Congratulations on the birth of your son!

I have no experience of what you & your son will have to face but as I occasionally work with the deaf community this popped up on my facebook today for learning British Sign Language at home.
I've no idea whether it is any good but I plan to give it a try.

Your son will have a wonderful life.

Zeebeededodah Wed 11-Sep-19 14:13:38

Congratulations on your new baby.

I have two children, now age 8 and 6 with hearing loss which wasn't picked up till they were 4 and 3 respectively (slightly different as they have some hearing). It was a huge shock at the time. They both wear hearing aids in 1 ear each, which helps in their cases. They are both happy to wear them and it is their normal! Its interesting how common hearing aids are generally now, and no-one seems to raise an eye-brow at them wearing them.

Ironically, I attended baby signing classes with both my children (before diagnosis) and it is amazing how they can pick up sign language at an early age before they could speak. I can still sign a huge number of nursery rhymes even now.

I'll echo that finding support from other parents that have been or are in a similar position really does help. Enjoy your fabulous baby for now.

Boobiliboobiliboo Wed 11-Sep-19 14:15:52

My brother is profoundly deaf, and no, he cant listen to music

Music isn’t only heard through the ears. It can be felt through feet, fingers and stomach. Different way of experiencing music than most, but there are many profoundly deaf musicians which should tell you something.

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