My 3 weeks old baby is deaf from both ears: he... - Baby and Us

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My 3 weeks old baby is deaf from both ears: heartbroken 💔

ToughCOOKIE78 profile image
8 Replies

We found out on Thursday that our very precious daughter, who is 3 weeks old, is deaf from both ears.

There is no history of hearing loss in our families and we’re absolutely DEVASTATED by this news. We are waiting to be referred for further investigation and to understand how bad this is. They’ve mentored cochlear implants so I assume it’s the worst scenario 💔

This is so unfair. After 6 years of IVF, countless injections, pain, tears and a loss last year….I thought our dream had come true.

I feel robbed of my happiness, I don’t know if my daughter will have a normal life being able to speak and be a kid like every kid and this is shattering my heart.

We didn’t deserve this. She didn’t deserve this. I didn’t think I could love her more but I do now love her even more ❤️

Will I be able to be the strong mum that she needs, right now and in a future full of hurdles?????

I have all kind of (bad) thoughts going on in my mind…..it’s still fresh news and I am so ANGRY with the universe….so so so ANGRY 😡

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ToughCOOKIE78
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8 Replies
Cassie_56 profile image
Cassie_56

Oh I am so sorry to hear this news but I can 100% guarantee you will be able to be the strong mum she needs now and for her life, you love her, will advocate for her, and fight for her and although it doesn’t seem like it now everything will be wonderful! It must seem massively unfair after the journey you’ve been on but that journey has just made you a stronger more resilient mum than ever and you will pass that on to your precious daughter.

There are some amazing specialists who will help you on your journey too and navigate those hurdles.

Much love to you and hope you can find peace and happiness once the anger fades x

Kyell2 profile image
Kyell2

I am so sorry, this must be so worrying and upsetting for you. It’s just not fair but you did so much to get her that you are already super strong and you’ll get her through this!!

I hope that you get an appointment soon so they can give you some answers, until then hug your gorgeous girl close.

Sending you lots of hugs xx

Bigblueskies profile image
Bigblueskies

I’m so sorry you are so affected by this news! It’s really hard when we know our precious babies have a barrier that make their life that little bit harder. It’s a hard readjustment of all we hoped and imagined for them. Big hugs to all of you!

But please don’t try and project her whole future in your mind as a sad one! She will learn from you first how to feel about herself and her life. There are so many amazing things she can be and do. There is a lot to be happy about, she was born healthy and she has been diagnosed so early that you will have plenty of time to put all the support she needs in place.

I have met some amazing deaf people with so much confidence and drive that it would feel completely disrespectful and surreal to feel pity or worry about them. There are so many inspirational stories out there and a whole movement about deafness being a different kind of ability rather than a disability.

I have met lots of young people with so-called disabilities who are thriving and happy. The big difference was that they were loved and supported from early on and I can already see you are doing all of that!

I know it’s really hard right now but continue to think about her future as an exciting prospect full of possibilities and her arrival as the amazing blessing that you have already experienced.

ToughCOOKIE78 profile image
ToughCOOKIE78 in reply to Bigblueskies

I don’t mean any disrespect of course, thank you for your kind words. This news hit us like a ton of bricks, right after we thought our 6 years ordeal with IVF was finished.

Would your words cheer you up if this happened to your daughter?

I have no doubt there’s lots of happy deaf people in the deaf community and I hope my daughter will be one of them but I can’t help being distraught at the thoughts of my daughter having to go to so many hospital appointments, surgery….and God knows what else!

She’s 22 days old today and she can’t hear my voice. The voice of her mummy telling her how much she loves her and this breaks my heart 💔

We live in a world that pretends to be inclusive but the reality of things is that ‘disabled’ people will always be disadvantaged and this is what I fear most for my daughter: not having the same chances to thrive in life.

What I can guarantee her though, is my unconditional and forever love and strength, my commitment in doing EVERYTHING I can to make sure she knows she’s my entire world and to support her in becoming who she wants to be.

But right now I just need to cry because this is just so unfair and something my heart wasn’t ready to take on. I still struggle to believe it’s happening 💔

Bigblueskies profile image
Bigblueskies in reply to ToughCOOKIE78

You are right about the world and I know from personal experience how devastating it can be to hear such news about our children. It is a major readjustment. Talking to a counsellor helped me and yes, stopping myself from projecting into their future my own worries and sadness helped me too. But you are completely justified to be hurting right now and worrying.

I have found that how I feel about them makes a big difference to how children perceive and understand themselves, so being able to accept and process my own feelings has helped us all to find the good and not focus solely on the difficult.

It might be not a helpful perspective for you at this stage of your journey, please do look after yourself and reach out to someone who can help you process all this in a safe environment.

ToughCOOKIE78 profile image
ToughCOOKIE78 in reply to Bigblueskies

Thank you 🙏🏻 I’m sure with time I’ll pull myself together and I’ll be ready to deal with this. I have had to deal with lots of crap so far (which is why I was hoping it would be over!) and I’m strong enough to deal with this too.

I love my daughter in a way I didn’t think it was possible (she’s my first child) and now I love her even more 💖

MissSaoPaulo profile image
MissSaoPaulo

Oh no, I'm so sorry it wasn't good news. Sending you all big hugs, it must be a huge gut punch and an awful lot to process. You'll find the strength you need, never fear xxx

Beatrix_K profile image
Beatrix_K

Aw ToughCOOKIE78 im so sorry to see this post 😞 Life is so cruel and unfair. I don’t get why it has to be so difficult for some of us…

It’s normal to feel upset and angry and to want to scream in frustration.

I wanted to say that this hurt too will pass even if doesn’t feel like it right now. she can have an amazingly bright future but no doubt will need your support and fight to get her over some hurdles.

My husband’s cousin started baby sign classes pretty early on and her girl could communicate with mum at just a few months old - and there’s amazing stuff experts can do to improve their hearing these days.

I know it’s not what you had envisioned but your love for each other is going to carry you through this. Xx

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