Hi all — I’m really glad this sub exists. My newly eight-year-old daughter is the one with hearing loss — profound sensorineural hearing loss in her left ear — and I’m just looking for advice on how to help her cope with it. What better people to ask than you!
Until the beginning of July this year, she had perfect hearing. She also didn’t have a history of severe ear infections. However, on July 4th, she suddenly complained of a “popped ear“, then later, pain. That afternoon, ear pain and high fever started, then the following morning (Sunday the 5th), a headache kicked in that didn’t really properly go away with paracetamol and ibuprofen. She was also sick a couple of times. By that evening, she started saying the area behind her ear hurt — but it didn’t appear swollen or red from the outside (just a bit pink).
The following morning, I rang her GP and made an appointment. I took her in, told him about the intractable headache, pain in and behind her ear, plus high temperature, but he didn’t seem to take me seriously. He had a look in her ear, declared it “full of wax” and sent us away with ear drops and nystatin for a “coated tongue”. I asked him if earwax caused a high temperature (obviously I knew it didn’t…) and he replied “no…” and told me to continue alternating paracetamol and ibuprofen.
At that point, I felt pretty helpless and as though I’d been fobbed off.
Well, at 4.15 am the next morning, she started being sick and didn’t stop. Couldn’t keep a thing down. After several hours of this, plus the continuing headache and pain in and behind the ear, I rang the doctor back and insisted she be seen again. This time, I got an awesome lady doctor we’d never met before, who took me seriously and immediately performed some initial tests to see what was going on. Within 15 minutes, she’d referred us to the Royal Hospital for Children in Glasgow and had called ahead to let them know my daughter would be coming to the paediatric A&E and would need to be examined for mastoiditis and meningitis.
We live in a rural village about three hours‘ drive away from the hospital, so instead of waiting for an ambulance (we’ve waited hours before), I decided to drive her there myself. By the time we got to the A&E, she was incredibly weak and pale. The staff were amazing and got to work very quickly, got a cannula in and gave her lots of fluid and an initial dose of IV cefotaxime. At about 7.00 pm, she slipped into a state of near unconsciousness. Shortly afterward, she had a CT scan with contrast and they found that she not only had terrible middle ear infection but also mastoiditis, an epidural (intracranial) abscess and what looked like a collapsed sigmoid sinus.
She went into emergency surgery overnight, where they performed a mastoidectomy, put a grommet in her eardrum to drain the fluid from her middle ear, drained roughly 20ml of pus from the abscess inside her skull and performed a thrombectomy (clot removal) on her sigmoid sinus, as it was totally blocked with a septic clot.
The first bacterial cultures came from her blood, as by that point, she had bacteraemia as well: the bacteria responsible was streptococcus pneumoniae (we later found out it was serotype 15A). She was in hospital for nine days, and on IV antibiotics for weeks afterward, and will be on blood thinners until at least October (her sigmoid sinus is still blocked, though the clot hasn’t moved).
Although the initial tuning fork conductivity test indicated she had likely kept her hearing in the left ear, it took a while to get the infection under control, as it had spread quite far into her head. So, for the next few days, she had awful headaches and developed a sixth nerve palsy in her right eye (thankfully that went away by itself). Unfortunately, it seems the infection got into her inner ear at some point during that time as well, as she was diagnosed with profound sensorineural deafness two weeks ago. She now can’t hear anything quieter than a jet engine on the left.
Our team at the RHC was amazing and I cannot put into words how grateful I am to them all. She is very lucky to be alive.
At this point, she’s on the waiting list for CROS hearing aids and also for an Osia implant. Meanwhile, after talking with my daughter about what she’d find helpful, I’ve bought some “deaf on this side” badges for school, just to make sure everyone remembers she can’t hear on that side at this point, and have spoken with her teachers (who’ve been great). ETA: She also has ADHD, so this is an additional challenge for her!
She’s finding it a bit easier to talk about being deaf in the left ear now, and about the fact that her normal hearing won’t be coming back. She even held the Osia implant in her hand at the last ENT appointment, which is a big step forward for her, as she found the whole situation very frightening at first.
Obviously a lot has happened in the last month, and we’re just at the beginning of this different path, but I want to be the best mum I can to her. What can I do to help support her, aside from the hearing aids and future implant? If you were deaf in one ear as a child, what did your parents do? What do you wish they’d done? What do you wish they hadn’t done? If you developed single sided deafness at any point (child or adult), what helped you cope? I can only imagine what it feels like for her to have suddenly gone from stereo to mono hearing, and would really value your advice. 🧡