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Posted by jenn
29/09/20 02:03 PM

Hi all new to here :) had my newborns specialist appointment yesterday and he is severely deaf in his right ear and near enough severely deaf on his left can hear at the highest decibel. I am completely heartbroken. Have taken impressions for hearing aids which hopefully get next week or the week after. Been referred to speech specialists as well since his speech will be affected to. Heartbroken doesn't even cover how am feeling right now, wondering what I did wrong in my pregnancy thats caused this. I know this isn't the end of the world and it could be worse. Just have to make sure I get the correct information and help to make his life the best xx

Posted by Catriona ndcs moderator
02/10/20 05:25 PM

Hi Jenn

Thank you for sharing your experience on your community and congratulations on your newborn.

It sounds like the diagnosis came as a huge shock. There’s no right or wrong way to feel and I know other parents reading this will know where you are coming from when you say you feel heartbroken. Often when we’re in shock and don’t know why something has happened we look to blame ourselves. There are many factors that can cause a hearing loss and you may find out in the future. It is very unlikely to have been that you did something wrong during your pregnancy. 

It is really positive that you are already reaching out for support and information. This will make a big differece to you and your baby. We believe that with the right support deaf children can achieve anything and we are here to support you all the way.

Hopefully in time other parents will respond here and share their experiences of when their child was diagnosed.

In the meantime if you need any personalised support or advice please contact our Helpline.

Take care

Your Community moderator team.

Posted by tipper
06/10/20 04:31 PM

Hi Jenn, if I could reach through the screen to you and give you the biggest hug I really would.  I just know exactly how you feel. My son has a moderate/severe loss in both ears and got 2 hearing aids at 3 months old. It broke my heart in pieces. I'm not going to lie and tell you it's all been easy because it hasn't but honestly my son is almost 6 now and is the happiest most lovable loving child you could meet. We've had amazing support from his teacher of the deaf and NDCS are absolutely amazing. They've helped us a lot! He's at mainstream school with a 1:1 classroom assistant and he is the most sociable child ever! Please try not to think you did anything wrong....we've never wanted to know the cause because at the end of the day it wouldn't change anything. please feel free to ask me anything you want and if I can answer I will Xxx

Posted by catherine
06/10/20 04:38 PM

Hello! I know exactly where you are...2 years ago this was me with my son Lewis. He is profoundly deaf in both ears  i was devastated and blamed myself. 

I promise you that support is there for you and will always be there for you. Your mind is jumping all over from his future education, how will he communicate, how ccan you make his life as normal as possible. 

My advice is this, take it one step at a time, take any help or advice (you don't need to use it) ask questions however silly you may think they are. Go to Tiny Talk classes (you will find them on Facebook) gping out with a child with hearing aids is brave and classes like this will give you confidence. Learn sign language, it's a great skill and fantastic to communicate....also with hearing children!

Any questions i will do my best to help you. I promise it will be ok.

Victoria xx

Posted by andi
06/10/20 04:48 PM

Hi Jenn, I know exactly how you feel, I'm sure most of us on here have all had that shocked and upset feeling when hearing the news anything is wrong with our perfect little babies 💕 Our son failed his newborn hearing tests and we got the news he was deaf, after further testing we found he is profoundly deaf and even with the hearing aids he has been wearing since a few weeks old still has no access so sounds. He is now 11months and just had some updated informatio test results to confirm that implants would not likely allow his to hear speech or therefore allow him to speak. Every appt is another upset where you listen, process and cry (and that's ok) then the next day refocus on our beautiful children and how we will adapt to help them achieve the best in life.

I'm sure we all blame ourselves at some point and this is normal. We have an indication that our sons condition is a rare genetic condition and although these answer don't change how we feel but it does help for us to educate him so he knows his children may inherit this one day and could have other complications.

Over lockdown we have been learning sign language as this will be his primary communication along the way we have had the support of family, friends, professionals and importantly the NDCS who have helped answer questions, share knowledge and meet others that share in our journey. This community I know will be invaluable to our son as he grows. so know that you are not alone and your family will be supported and our sons will grow into amazing young men xx

Posted by rebecca
06/10/20 08:06 PM

Hello Jenn,

I am so sorry to hear of your newborn's diagnosis. My son too was born with severe hearing loss in both ears. For me it felt like a punishment until I realised that he was a gift, not a punishment and as soon as I realised that (and that it wasn't about me anyway) I started to read and learn everything I could about deafness and disability and raising a deaf child. They say that knowledge is always empowering and to me, it was a salvation. Stories of other parents and more importantly, successes and learning of the potential your child has, deaf or not, is what helped me the most. My son is 18 now, he wears 2 hearing aids and lip reads. He is bright, funny and has the most amazing attitude to life. I am proud of him every single day. I am not saying that it is easy or that there won't be struggles but you will get through them because it is your child and nothing else matters. My boy started a History degree at University last week and all those difficult years at school and statistics that tell you that deaf children underachieve are simply there to be proven wrong. Good luck on your journey. There are wonderful people out there willing to help and support you whenever you need it. Wishing you all the best xx