Hi!

fellow connexin 26 carrier here!

our son was Discovered as deaf at newborn screening moderate in both ears and wears aids in each we discovered on investigations it's because we carry it!

Hello!

I'm also a connexin 26 carrier.

My son was diagnosed at the newborn hearing screening and has just turned three. He is profoundly deaf and has bilateral implants.

We have no family history of hearing loss so the diagnosis and then the genetic results were a complete surprise!

Hi

Me and and my husband both have connexin 26. It was a complete surprise when our first born was born profoundly deaf in both ears. He had bilateral implants at 10 months and is now 2 and a half and is doing great. We've got a 7 month old daughter who passed the hearing screen so doesn't seem to have received the gene or is just a carrier x

Hi, 

I'm mum to 2 deaf girls, connexin 26 mutation. Had no idea my husband and I were carriers until my eldest was tested.

Eldest is 8, is severe/profound and wears 2 HAs and is in mainstream school. Youngest is 5, oruginally diagnosed as moderate but now severe/profound and is having CI surgery next week and has just started reception. She has also suffered from glue ear but we managed to avoid grommets by using an ear popper instead.

Hi!
Yes, both of our sons are deaf due to the connexin 26 gene. Like everyone else, we had no idea we were carriers of the gene and there's no history of deafness in our families. Both failed their newborn screening test and had hearing aids by 3 months.

My eldest is nearly 7 with severe/profound loss. He wears hearing aids and goes to a mainstream school with an excellent deaf provision within the school. My youngest is nearly 3 and has a moderate loss and also wears hearing aids. We sometimes use Sign Supported English to assist with their understanding and they're both doing great!

We've been to an NDCS run event to meet other parents of deaf children and I also go to a pre-school group run by our teacher of the deaf but we've never met anyone else who has deaf children as a result of connexin 26, so it's nice see you all!

Thank you all so much for your replies It would be lovley to be able to have a meet up, I didn't realise this gene is so common 

Hi All,

More connexion 26 parents here !!

We also had no idea that we were carriers until our daughter was born. It was really difficult getting her the help she needed as it was a nightmare getting accurate hearing tests as she kept on falling sleep on the way to the hospital. It wasn't until she was 3 that she finally got her aids.

Cut to 11 years later....  She is now 14, goes to mainstream school and gets on amazingly well even though she is severe/profound in one ear and severe in the other. One super proud mum x