I thought today I would write about an experience we had which involved Hope’s hearing, audiologists, speech, and finally an ENT specialist.

Did you know 36% of children with Down syndrome have some hearing loss? It’s another one of those things you probably wouldn’t know unless you were potentially faced with it. It’s another thing I didn’t know until just recently. Because of this it means for the first few years of her life, Hope has to have regular hearing tests and this will continue throughout her childhood but hopefully will become less frequent as she gets older.

I’m not sure how to explain the hearing test. Our first one, they waited until Hope was asleep and then attached things to her head and I guess monitored what happened when different frequencies were played. Since then, they have had to do something different. While sitting on my lap, they distract Hope with something then play a sound beside her and have a puppet show type thing when she turns to look. As the parent, we cannot make any movement towards the sound ourselves because it may affect how Hope responds. It’s tricky not to turn and look when there’s a weird high pitch beep happening beside me…. but perhaps that’s just me. The problem I found is that after a while, Hope just isn’t interested in the sound and the puppets, she’s more interested in whatever they are trying to distract her with in the first place. So figuring out how well she hears must be difficult. In the end, I believe they still notice the little moments where it’s obvious she heard something, even if she hasn’t moved. The second part of the test is much easier, they put something in her ear and get some sort of reading from it, I believe an inner ear reading.

About a year ago, we went for one of these hearing tests. It was fine, they were lovely, did the test, did all their checks, told me Hope passed her hearing test, all was well and we booked in a follow up for a year later. They also said they would send a report in the mail. A few weeks later, we received that report and when we read it, we really had no idea what we were looking at. We weren’t audiologists so we just took their word, that all was well with Hope’s hearing and we had nothing to worry about.

Ben decided to take the report to our speech therapist. Obviously, Hope’s hearing would affect her speech so we thought it would be good for them to know what was happening with her hearing. As it turns out, this was probably the best decision he could have made. She read the report and asked us whether they said anything about fluid in the ear. They hadn’t. She asked us if she could call the audiologists to discuss the report in more detail, and of course, we were happy for her to do so. It was obvious right away that there was something, we potentially hadn’t been told.Â

A few days later, we heard back from our speech therapist. She told us, Hope has fluid in her ears. With the fluid in her ears, she can’t actually hear properly and she may need grommets. Basically, they were right in saying that Hope could hear, but what she was hearing would have sounded like she was underwater, muffled and really unclear.

The rest of the story is pretty straight forward. We booked in to see an ENT as suggested, they confirmed there was fluid in her ears, we booked in and got grommets the next day, and were told to follow up in a few months.

Now… let’s go back to the speech therapists call with the audiologist. We weren’t there, so we don’t know exactly what was said but it sounded as though when they spoke the audiologist really didn’t put any value in Hope or her ability to hear correctly. She said something along the lines of “she’s only 18 months, she’s not supposed to be talking yet”. I wonder if she would say the same thing about a typical child? I wonder if she just thought they didn’t have to worry so much because she was bound to have issues, due to her Down syndrome? I don’t know. I can’t speak for the audiologist, but it’s what it sounded like. It was like they expected Hope would have issues, so they almost didn’t care and just said they’d check again in a year because that’s what they need to do. You may say, well she was right in some ways, at 18 months, many kids aren’t speaking. The problem with that thinking is that with Hope hearing the way she was, it was going to delay her speaking even further. How would a child learn to speak, if they can’t even hear sound properly? The way she was hearing, she wouldn’t even be hearing her name properly, she simply would have heard the ‘o’ sound. That’s really it. It just wasn’t good enough. Ben and I were both shocked and a little angry. Being told one thing, when results show something else just wasn’t what we had expected. I guess it wasn’t necessarily incorrect information shared, but maybe more a case of ‘selected’ information shared. We still believe the full story should be told. After all, this is our child, shouldn’t we know the full story.

So that’s the negative part of the story… but there’s a positive side. We have a speech therapist that cares so much for our daughter. She fought for our daughter when we didn’t know we needed to. These are the people we need in our lives. We need them to guide us. We aren’t medical professionals. We don’t know how to read the reports. We don’t always know what to look for or where to look for it. But our therapists, and the medical professionals we see do. We put our trust in them every time we visit them. Our child’s future depends on them.  I hope this misinformation doesn’t happen again, but I am so glad that we have therapists who care enough to fight and ask more questions. You don’t realise how much you need these people until you need them.

After getting the grommets in, people were seeing the difference within days. Hope was responding better, and you could see a difference in the way she responded like she was hearing differently. We are continuously working on her speech and had a hearing test again, with a different audiologist, just recently finding out that one grommet looks to have fallen out. We’re waiting now to go back to the ENT to find out if we need to get new grommets.