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My daughter was born with normal hearing, but by 4 years old she was no longer hearing within the normal range.  It took some time to diagnose the cause, but we now know a cholesteatoma  was the culprit.  At her most recent audiology appointment, she was diagnosed as moderate/severe hearing loss.  She wears hearing aids to help her hear.  The new devices have brought confidence and access to the world around her.  It also brought a lot of questions.

To help explain the devices to both her and her younger sister, I’ve turned to stories and toys.  Talking about what hearing loss is, devices worn, and stories of individuals thriving is really important.  After a year of being aided, it’s second nature to my HOH and her sibling.  Although my preschool still confused “hearing aid” with “earring.”  As a mama, I never want to correct those adorable little mispronuncations (grapes = beeps, for example) so I’m letting it slide for now.

Books to Teach Children About Hearing Loss

Freddie and the Fairy by Julia Donaldson

One of my favorite Halloween stories is Room on the Broom with its rhyming tale of a witch who drops her belongings along her journey and ends up picking up a few friends along the way.  Freddie and the Fairy is similar in its childlike whimsical rhyme pattern and tells the tale of a little boy named Freddie.  When he finds a fairy named Bessie-Belle, she agrees to grant his wishes.  The conflict arises as the fairy doesn’t hear very well, and Freddie mumbles.

This is a great conversation starter about hearing loss. It’s also a great resource for siblings or friends.  After reading, chat about what others can do to help their hard of hearing friends.  Yelling isn’t needed, but there are things we can do to help.

Some easy habits to communicate a friend with hearing loss:

• Face your friend
• Don’t cover your face
• Cut down on background noise

Maxi’s Super Ears by Maggie Klein

This is a great option when a child receives his or her first set of hearing aids.  Maxi is a little boy (based on an actual child) who learns about acceptance.  Assistive technology makes you special, and that can be a very cool thing.  Preschoolers through young elementary students will love Maxi’s “super ears.”

Boy by Phil Cummings

Boy speaks with dancing hands and draws pictures in the sand.  In Boy, the Deaf protagonist can’t hear what all the fuss is about as the king battles the local dragon.

This is a great conversation starter for sharing that “dancing hands” is a special language called Sign Language, and a great reminder that people who are Deaf can live happy and even heroic lives.

 Let’s Hear It for Almigal  by Wendy Kupfer

When my own daughter first received her hearing aids, she commented that she could hear the wind.  Likewise Almigal is on a quest to hear it all when she receives her cochlear implant.  It’s full of the sweetest sounds that none of us should take for granted.

Lucy by Sally O. Lee

My own daughter started with one-sided hearing loss, or unilateral hearing loss.  However, further assessment has identified loss in both ears.  Lucy can’t hear out of one ear, and her story is a great one to share with children to understand this partial loss.

El Deafo by Cece Bell

A graphic novel, great for older students, El Deafo has the super power of the Phonic Ear.  It’s a great choice for embracing the challenges that face us all.  It’s also a great talking point for anyone who uses an FM of other amplication system in the classroom.

The middle school years can be rough on all of us.  El Deafo is a great resource for how we should treat anyone with a disability.

We are continuing to learn about hearing loss as a family.  Stories such as these help open up conversations and bring a little understanding.  Do you have any favorite books about hearing loss to add to the list? Share them in the comments! 

I am sharing our experiences; please seek information from your medical professional.  All thoughts and opinions are my own.

For those of you who may be new to Clementine County, I’ll give you the short recap.  Recently, my daughter endured a tympanoplasty and mastoidectomy to remove a cholesteatoma and reconstruct her ear drum.  Her two first ear bones were damaged and also removed.  There’s more background on her condition.

In addition to this intense 4 1/2 hour surgery, her ENT also performed a myringotomy on her “good ear” to drain fluid.  There’s also information on cholesteatoma recovery.

Non-medical version: They took out a tumor and two bones from her head.  Then they cut a hole in her other ear drum to drain excess fluid.

Obviously, your ear bones are pretty important in the hearing process.  We had been told her hearing in the affected ear would decline (it did).   During previous audiograms, test results showed severe hearing loss in her left ear and mild-moderate loss in the right.  New to the world of hearing loss, I have been taking in as much information as I could find about children with unilateral hearing loss, assistive technology, and what we needed to do to ensure her success.

We’re just about two months out from her first procedure and met once again with her audiologist and ENT.  I’ve got to admit that I have been anxiously awaiting this appointment.  Now that her ears have recovered from the surgery, how much hearing would she have left?  People would ask me if she could hear, and I honestly didn’t know.

I know, I know.  How do you not know whether or not she can hear you?  Well first of all, she’s a kid and kids aren’t notoriously great at listening.    Secondly, her good ear compensates a lot for the other.  She also is a great lip reader so as long as you are looking at her and being purposeful with your speaking, she gets it.  However, she misses a lot of sound coming from behind her.

But at today’s appointment we got some good news!

2-Month Hearing Update

Her hearing shows mild to moderate hearing loss, with an increase of 10-20 decibels!  Her “good ear” still registers at mild hearing loss, but nothing too crazy.  That means she’ll require hearing aids, but that’s been part of the plan all along.  I’m still floored.  Nothing I had read about cholesteatomas showed any improvement in hearing.  For goodness sake, the doctor took out two of three ear bones.

I went in to today’s appointment anxious, listing all the sounds I adore and the things she’d miss out on if she were profoundly deaf.  The sound of waves crashing on the beach, the hum of amplifiers before the band gets started, the trotting of horses along Main Street.  She’ll get them all back.   It’s true that they’ll come with the help of hearing aids after her next surgery, but she’ll get them.  And ladies and gentlemen, that’s worth celebrating.

Thanks for celebrating with us!

This is our experience, and should not be confused with medical advice.

A little background on how we got to surgery day.  My little one qualified for speech therapy due to some slight delays.  For many, it might not have been that noticeable.  However, -ar and -er continued to plague her.  Both blends are in her name.  It’s kind of important to be able to say your own name.

The initial diagnosis came during a different procedure.  After failing a hearing test, we worked with our daughter’s ENT to determine the cause.  She went in to have a new set of tubes put in her ears in hopes her ear would drain, allowing her eardrum to fluctuate and improve hearing.  During the surgery to insert tubes, her doctor found the cholesteatoma.

Enter the months that seemed to drag on and on.  After discovering the cholesteatoma, we had a change in our health insurance.  That meant starting over. Ugh.  New ENT, more waiting.

After an MRI confirmed the presence of the cholesteatoma, we were scheduled for surgery.  Another round of hearing tests were done to have a new baseline.  Unfortunately in six months, her hearing had declined significantly.  Previously the doctor had said our best case scenario was “near normal hearing.”  With the rapid decline in hearing, damage to her delicate bones was logical and, therefore, our best case was no longer mild hearing loss.

What to Expect from your Child’s Cholesteatoma Surgery

Day of Surgery

We arrived early at the hospital for check-in and lots of waiting.  The tympanomastoidectomy surgery was scheduled to last four and a half hours, and went the whole time.  After we were able to be with our daughter as she slowly woke up from the anesthesia.  After about an hour in recovery, she asked to go home.

Her ear was covered with a cup, stuffed with gauze and cotton.  The gauze needed to be changed periodically because her ear did bleed a little.  She didn’t talk much, didn’t eat much, didn’t do much.

She spent the rest of the day on the couch.  She took the prescribed pain medication, ibuprofen, and antibiotics.  I also applied ice as requested.

Day 2-3

The following day, my little one continued her residence on the couch.  She ate exclusively soft foods like pudding, Jell-o, and mashed potatoes. She said it hurt to eat, and it hurt to talk.

By the next day, she continued to depend on mainly soft foods, but started requested things with a little more sustenance.  She was sitting up more and doing art projects.  She would move around the house from one comfy spot to the next.  By Day 3, prescription pain medication wasn’t necessary.
Her ear continued to drain and the cotton and gauze needed to be changed every few hours.

Her doctor had said showering would actually be good for her wound behind her ear, as the shampoo would keep it clean.  She DID NOT want to get it wet.  It took a lot of bribery to get her into the shower.

Day 4-5

Total change!  She started seeming more like herself after surgery.  We did a little homework and even went out of the house to run a quick errand.  Although the doctor had only required her to wear the ear cup for two days, she was hesitant to take it off.

It was reassuring to see her back to her old self, plus she seemed to be in less pain.

Day 7

After a week, it was time to remove the packing from her ear canal.  The stitches were healing nicely. She had asked to be able to see the stitches, so we took a picture to show her.  In hindsight, I’m not sure she was ready.  For the most part she had been blissfully unaware.

She went back to school on Day 7.  There was still a tiny bit of bleeding draining from her ear.  A quarter of a cotton ball in her ear caught most of it.

Heading into surgery our goals: a healthy head and improved hearing.  Unfortunately, the cholesteatoma surgery only helped remedy the healthy head part.  During surgery, two hearing bones were removed.  That in addition to sound being conducted through the cholesteatoma have decreased her hearing to almost nothing in the affected ear.

Update: Her hearing did decrease to severe loss post surgery.  However, there were some incredible improvements one year post-surgery.

One thing we hadn’t anticipated was a need for follow-up surgeries.  She will require an additional, albeit much shorter, surgery in six months.  Time wise, we’re looking at a 2 1/2 surgery.  The goal then will be to put in bone implants and check that nothing has grown back.

Despite our desire for this all to be done, it sounds like we’re in for a little bit longer.

Update: At the 6 month appointment, her ENT has decided to forego the reconstruction surgery.  She’s thriving without it!

The scar is minimal and really not noticeable as it is completely behind her ear.  We keep regular appointments with the ENT to monitor her ear health and also regular hearing aid appointments to keep those in top shape.  

Looking for more posts on cholesteatomas?

Loss in flux. Read more about Hearing After a Cholesteatoma.

Explaining hearing loss to a child can be a great opportunity to build understanding. Try one of these Books about Hearing Loss.

Again, I’m just a mama and my art degree shouldn’t take the place of a doctor.  But I know how scary it can be to go into a procedure without knowing what to expect.  Hopefully sharing our experiences will be helpful for you and your family.

If you have any questions, I’d be happy to share any details I can.

My sweet Harper loves glitter and unicorns.  She is a whiz at math and has a tremendous gift in art.  She’s easy to get along with (total middle child), a great snuggler, and a collector of little things.  She’s obsessed with toy videos on YouTube.

Harper also has a cholesteatoma.  Without getting too doctor-y, a cholesteatoma is an abnormal cyst formed from years of chronic ear infections.  The cyst eats away at whatever it touches–in Harper’s case the three delicate bones of the middle ear.  Harper’s cholesteatoma is isolated, thankfully.  Worried mothers in the middle of the night should not consult Google.  There are so many worse cases.

Glasses!

A post shared by Melanie Walsh (@clementinecounty) on Aug 9, 2016 at 6:29pm PDT

For nine months, we’ve been working towards getting Harper a healthy head.  A surgery in November removed the part accessible from her ear canal.  Today, Harper has surgery to remove the remainder of the cyst.

Thinking back to that November surgery, it was when things got a little crazy.  She was supposed to be having tubes put back in.  The ear infections have dramatically decreased.  But her ear drum didn’t fluctuate the way it should.  The thought was too much fluid behind her ear drum had built up and hardened.  It was supposed to be a 15-minute procedure and then her hearing would be normal.  As the ENT called me back to recovery, and started his explanation with “Well…” I knew it wasn’t good.  It’s not cancer, I remember him saying that.  The rest was kind of a blur.  I made him spell “cholesteatoma” so I could write it in the notes on my phone.

As we head into the hospital today, there’s so much still uncertain.  How much bone will need to be removed? Will bone implants be needed?  Will she be able to hear?

The primary goal of the surgery is a healthy head.  The secondary goal is to protect her remaining hearing.  Her hearing diagnosis is in flux.  Previously, my darling little girl had mild-moderate unilateral hearing loss.  More recently, her affected ear registered moderate-severe and her “better ear” at mild-moderate.  Again, not trying to be too doctor-y.  That means she can’t hear conversational level speech from her left ear.  Unless you’re facing her and speaking loudly, she can’t hear you.  Until the cholesteatoma is removed, her audiologist is waiting for fitting her with a hearing aid.  I hate that she’s spent even more time missing out on so much around her.   Her right ear, the “better” ear, will be examined during surgery to investigate the decline in hearing.

Much to her credit, Harper is very good about asking you to repeat yourself if she didn’t hear you.  Of course, she has to know that she missed you saying something.  If you’re behind her, I’ve noticed she doesn’t pick up what you’re saying very well.  She uses lip reading to fill in what she may have missed.

At seven, I marvel at her maturity.  She admits she’s scared and sad.  She knows she can’t hear, and that surgery is the only option to protect her from further damage.  But thankfully, she’s also blissfully unaware of all the things on Google.  The things that weigh on our hearts as we send our darling daughter into a four-hour surgery.

As challenging as this day is for all of us, it’s been a long process.  It’s almost a relief to be able to move past this and figure out what the new normal will be.  One day I’ll sit down and write all my thoughts on the challenges of such a diagnosis as a parent–the heavy heart, the mom guilt, the intense worry.  But for today, I’m starting here.