How Frederick's parents felt empowered

For Amy and Daniel, attending our family event for 0–2 year olds was important to find out how best to support their son Frederick (eight months) and get the answers they needed. Amy tells their story...

"Frederick was born on New Year's Day and for that reason they didn’t have the staff to do hearing tests at the hospital, so we were asked to go to our local hospital’s walk-in audiology testing department. I had no idea and no expectations.

We had the test and the audiologist couldn’t get any response. I thought it was the equipment but she used another set and was concerned there was still no response.

I didn’t really know what to expect after that and she said, “I’m referring you to St Thomas’s; it’s nothing to worry about.” She thought it would be fluid in the ear, and said it was just a precaution.

A week went by and during that week I took Frederick to a restaurant. They accidentally blasted out a ‘Happy Birthday’ tune far too loud and the whole restaurant gasped. I thought he was going to start crying and he didn’t, so then I started to think maybe there was something wrong.

"Initially, we felt shocked and found the diagnosis very hard to digest."

We went to St Thomas’s Hospital in London and had hours of testing and they confirmed on the day that he had a profound hearing loss in both ears. We didn’t even know what that meant and thought, “Where do we go from here?”

Straightaway they said they were going to fit Frederick with hearing aids and see if they helped and then we should come back for further testing, but test after test just confirmed it – they weren’t wrong.

Initially, we felt shocked and found the diagnosis very hard to digest. We couldn’t believe it was correct and kept clinging onto the idea that he may well have had complications due to me having an emergency caesarean section birth after a long labour.

We thought that it had to be related to congestion in the ears. In all honesty we were completely in shock. We couldn’t make sense of it, and didn’t for a while.

The audiologist instantly gave us a National Deaf Children’s Society booklet. I didn’t take much notice of it at first because I had too much to look into, but the National Deaf Children’s Society had more answers than anyone, including the audiologist and ENT specialist. I just wish I’d taken notice of it sooner.

I signed up to become a member and they sent me availability of different events. I saw the family weekend for 0–2 year olds and thought, ‘fantastic’ and that’s when I called them and they were very helpful. They sent me the paperwork straightaway and we were booked on.

"It was good listening to different people’s experiences."

We found the event a lot more useful than I thought we would. I thought it would be more emotional support, and it was, but it had a lot more topical information that we needed to know. I felt it allowed us to veer off on a tangent that wasn’t originally the main aim of a session; they just went with what we wanted and that was fantastic.

They covered so much in two days, which was exhausting, but worth it. Everyone was allowed to intervene with different comments or questions, especially when we met specialists like the audiologist. If a topic wasn’t on their list of things to bring up, they allowed us to add it.

What they did really well was make it very clear that there’s no right or wrong answers and it’s all down to you as parents; what you think is best, and they let parents lead. That, for us, was really refreshing because normally you see audiologists and they are very black and white.

"There were all these things that we got some reassurance about."

There was so much information that it was really overwhelming, but in a good way, and we just took away the bits we needed from it. It was good listening to different people’s experiences.

We identified some major key-issue concerns that we’re now looking into in depth, whereas before it was all very broad and we felt quite lost.

Our biggest issue was understanding the tests carried out by the audiologists: how accurate were the tests? How did the tests work? Who could help us to fully understand the tests being carried out? We had so many concerns and questions as it was all so new to us. I thought, “Should we be doing more?”

After the event I feel empowered and confident in what I’m doing. I know I’m doing everything I can, and that’s really good to know. I walked away thinking, “I do that, I’ve checked that, excellent.” There were all these things that we got some reassurance about.

The parents that attended created a WhatsApp group and now we regularly reach out and say, “Hey, how’s everyone doing?” and fly questions around and somebody will have something they can offer, such as a resource from a website or some experience.

I’ve already met with one of the mums from there which was really good. Talking to the people that went on the event has been so helpful. We all seem to be singing from the same hymn sheet. You can say, “Today I feel rubbish,” or “Today we had a really good day and I think they’re recognising the sign ‘mummy,’ yay!” It’s just that kind of emotional support that helps.

I couldn’t recommend the event enough and I actually have done to three parents. We’ve had quite a few new parents join our local sing and sign group who have come in very upset.

I can’t believe that in such a short period of time I’m so chirpy about things and say, “It’s fine. You’re going to be fine,” when I was exactly the same. I know that it’s worth their while going on that weekend and they’ll feel better afterwards, albeit emotional and exhausted. But it’s totally worth it, every minute.

"We are truly blessed and so fortunate to have such a brave and strong boy."

The next step for Frederick is his cochlear implant (CI) assessments. Hopefully, he’ll be eligible for implants as he isn’t gaining much from his hearing aids due to the severity of his loss. We want Frederick to have the chance to access sound and after extensive discussions with professionals and ongoing research, we believe CIs are the best option for him.

We realise that Frederick will need to rely heavily on sign language as well and we have already started the necessary British Sign Language courses. We know that won’t be as difficult for Frederick as it will be for us!

He is the most content and happy little boy and we hope as parents we can provide him with as much as possible to have the chance to access sound.

Whatever the outcome, we are truly blessed and so fortunate to have such a brave and strong boy.”