On Discovering Etta Had Sleep Apnoea: An Education

Parenting doesn't come with a manual.  I don't think there is a way any human can be prepared to deal with the stuff you might have to deal with when you become a parent.  You have no way of knowing what personality your kid might have, the kinds of things they struggle with or what health issues they may have.

I think parenting is tough for us all.  We all have our different challenges and we find ways of managing them in many ways.
Baby Etta - no way we could know what
challenges she might face.

From early on we knew Etta was different.  I wrote a three part blog series on this back in 2017 as it really affected our daily lives and I hoped sharing our experience might be useful for other parents dealing with similar.  Pretty much the same reason I'm writing about this.  At the time of writing those posts I thought we finally had some answers - Etta was gifted and had sensory issues.  That made, and still makes, total sense.  Etta's behavior is fairly typical of both of these things.  Parenting her was challenging, but that was to be expected.  We hadn't realised there was anything else missing from the picture.

But subsequently we discovered she had a significant health issue that was amplifying her issues.  And it was not something we would have easily picked up without help.

Tonsillitis, a pretty normal childhood illness    

Etta first got tonsillitis when she was not quite 2.  It was scary for a day or so, but she took her antibiotics and she got better.  Then over the last two years she had a few bouts of tonsillitis and  strep throat back to back.  From the many other parents I know I'd heard that tonsils are usually only considered problematic when there are back-to-back bouts of tonsillitis over a significant period of time.  As this wasn't the case (yet) we still weren't too concerned.

But during the last bout of strep an A&E doctor said it might be worth seeing a specialist purely because of the size of her tonsils.  This doctor's comment made all the difference.

We figured, why not?  We are fortunate in that we have health insurance, so there was no additional cost or harm we could see in following up on that advice.  When I saw our GP for a referral she told me in her opinion the appointment was unnecessary.  She said it was unlikely a tonsillectomy would be recommended.  I wasn't concerned.  I reiterated that I was just following up on other advice.  I'm not a medical professional.  I have no way of knowing what the best course of action would be.  But I am a parent, and I care about the wellbeing of my kids.  And I knew a specialist would know better than two GP's with differing ideas.  The GP gave us the referral but made it clear that we were most likely over-reacting to a normal childhood illness.

Gillies hospital was fantastic.  Unlimited iceblocks, jelly and lollipops.  And lunch for us too.

With health insurance, appointments are fast.  I have friends still waiting through public for the same consult and it's been more than four months.  We had an appointment to see an ENT specialist at Gillies Hospital within two weeks*  I steeled myself for being told off for wasting this guys time.  But before we even saw him the receptionist gave me a questionnaire to fill out.  It asked a series of questions that no-one had ever asked me before - about Etta's moods and behaviour.  When I saw the specialist before he even looked down her throat he told me she had all the symptoms of sleep apnoea.

This was an education in itself.

Etta sleeping with Nettie.  We had no idea Etta    
wasn't getting the sleep that she should be.     

It turns out I knew basically nothing about sleep apnoea.  I had been asked by GP's if she had sleep apnoea previously and I said no, because I didn't really know what it was.  I always thought it was something older, overweight people got. I thought it meant you stopped breathing in your sleep.  I had heard of CPAP machines, but only because a few comedy movies and sitcoms I've seen had annoying characters use them to disturb everyone's sleep.  I had no idea this was not just a domain exclusive to older people.  I had no clue that kids could have it.  I had no idea that her irritibility, trouble sleeping or her snoring were all common symptoms.  No-one had asked me before.

We did know that Etta was chronically exhausted.  Once she started school we had to stop all her extra-curricula activities as she just didn't have the energy for them.  Whilst she performed well in school, once it had finished each day she dissolved into a sad, grumpy mess of a kid.  Normal playdates with friends were tricky.  She would want to go, but once there was too tired to handle being in a new environment.  And we are those strict early bedtime kinds of parents, so she wasn't going to bed late.  She did sometimes wake overnight but she's an imaginative kid** with sensory issues so that seemed normal.

Bride soup, one of the only meals containing some vegetables that Etta will eat.  It is delicious

Because of her sensory issues, for a while I thought her tiredness might be due to her lacking-almost-completely-in-vegetables diet.  So we decided to take her for a blood test.  And while that was a horrible experience in itself (took me plus another phlebotomist to hold her down while a second phlebotomist took her blood) it came back clean.  They'd checked her iron, her B12 and given how pale and thin she is, they checked for Coeliac disease too.  Her bloodwork was perfect.  We've subsequently discovered she was chronically tired because she had sleep apnoea.

That in itself was enough for the specialist to say she fit the criteria for surgery.  And when he looked at her tonsils he could tell us they were so enlarged that the ends had flattened off.  We relax when we're sleeping, which drops the tonsils down further.  So while she slept they were pressing together almost totally obstructing her throat.  This is what caused the flattening off.  We had no idea that this was causing so much trouble for her.

This book made all the difference to Etta

Again, scheduling was quick.  She was booked in for surgery just over two weeks after our consult.  The best thing about going through private besides the time frames were that Etta was treated with the utmost care and respect.  She was given a book which showed a kid like her going through the procedure so she knew everything that was going to happen.  She read that book over and over again.  And for an anxious kid, when the day came for her to have the surgery we had no protests and no tears.  It was a wonderful surprise.

The surgery itself only took about 20 minutes.  We'd signed off on her having an adenotonsillectomy in case her adenoids needed removing as well.  Post surgery, while Etta was in recovery her surgeon told us it had gone well.  Her adenoids had been blocking 85 - 90% of her airways, so this surgery really would be a life changing for her.  And while the first week of recovery was very rough (she wouldn't eat at all for two days of it), six weeks post surgery, we are already seeing those changes.

Our surgeon had told us that the difference this surgery makes for kids like Etta is huge.  Sleep apnoea has a massive impact on a kids ability to grow as they should.  It affects things like their weight, height, their attention span, their ability to socialise and their ability to deal with conflict.  Once sleep apnoea goes, those issues dissipate.  He said many kids have a growth spurt post surgery, and most see improvements in their school work. 

The biggest change we've seen in Etta so far is that she is just a happier kid.  Every day is not such a struggle for her (or us) any more.  We've been able to enroll her in an extra curricular class this term and she, for the most part, enjoys it.  She fights with her sister less.  Her ability to communicate her thoughts and articulate her feelings has improved so she has tantrums less.  She's leapt up two reading levels and she's even showing more interest in trying new foods.

We have a different kid at home.

* I think this is so wrong.  Our public healthcare system needs to be better.  As it stands curently, it isn't able to best serve our people and I know so many people who should have a better quality of life due to simple issues, that can't because of the constraints of our health system.  This doesn't just cost those people, but costs us all financially as preventative or early intervention cost the health system far less than the ambulance at the bottom of the cliff approach.  Those who are financially stable should not be the only people able to access decent care within decent time-frames in Aotearoa.

** She currently is having trouble going to bed because she read about sleepwalking and is now terrified that either she will sleepwalk somewhere and wake up and be scared, or that someone will sleepwalk into her room.  So the sleeping thing wasn't just sleep apnoea.  Her imagination is still a large factor in her anxieties.