I have been meaning to write this post for weeks now, but at the same time have been putting it off and off and off. I guess writing about Alex’s sleep apnoea diagnosis doesn’t constitute the most pleasant of posts, and I have been trying not to think about it all too much as it’s such a worry. But nevertheless, I feel I ought to share this story, because if it might help someone else, then that’s worth it, isn’t it?
In January my little Alex was diagnosed with severe obstructive sleep apnoea. It came as quite a shock, I’ll be honest, even though we had been expecting the outcome, having waited to be seen by a consultant for several months. We just did not expect the severity of it. But I’ll start from the beginning.
Ever since Alex was a little baby, he’s snored. Every night, and very loudly, like an old man. I mentioned it a few times to the health visitor at check-ups, but I was always given the standard answer “some children are noisy sleepers”. So, we kind of accepted and lived with it, and – naively and stupidly in hindsight – adapted an “Aw, bless him, such a noisy sleeper, snores like an old man!” attitude. Now I could kick myself so much for it and that we weren’t more insistent with the medical staff at our GP surgery to check properly and pursue it. But I honestly never even knew that small children could have sleep apnoea (apparently between 1 and 3 per cent of children suffer from it, though they tend to be older). I had only ever heard of it in the context of old, overweight men.
It wasn’t until we went away for a weekend with friends last summer that we realised that actually, no, this isn’t normal at all. All of our friends commented on the gravity of his snoring several times throughout the evening/ night after we’d put all the kids to bed, and my friend Miranda then told me about her friend’s little boy who had been diagnosed with sleep apnoea and needed an operation. That’s when the penny really dropped, and the day we got back from this trip I instantly made a doctor’s appointment. On examining Alex’s throat our GP confirmed that Alex’s tonsils and adenoids were significantly enlarged (even when not infected) and touching, which is an indication of an obstruction which can cause breathing difficulties at night. She referred us to a respiratory consultant at the children’s hospital.
To cut a long story short – the initial referral was lost, and after a lot of chasing, complaining etc. and nearly seven months later (I know waiting times on the NHS are bad, but I had no idea that they would be this terrible when it comes to children!) - we were finally seen by the consultant in early January. In the meantime, an agonising wait for us ensued. Alex’s sleep pattern continued to be disrupted and his snoring severe.
The typical symptoms of sleep apnoea are loud snoring, frequent waking at night due to a lack of oxygen, lots of coughing and choking as well as irregular breathing with long pauses in between each breath. In Alex’s case, this is to the point where it feels like he’s stopped breathing until after what seems like ages, he gives out a violent snore and finally catches a breath, which is really scary. John and I are forever hovering over his cot at night to listen in on him, nudge him, and make sure he is ok. He is also very sweaty during sleep, which is also a symptom of sleep apnoea because the heart rate is raised due to the physical struggle to breathe. And he generally just breathes through his mouth, even in daytime, which makes him sound a little bit nasal.
Sleep apnoea can impact on growth, as kids grow in their sleep, and leave them tired, cranky and irritable in the day. The latter isn’t so much the case with Alex, because he’s remained a happy little chappy, but some mornings he looks absolutely drained, and his daytime naps can be as long as three hours at a time. Again, stupidly, I’ve always thought that he’s just a good daytime sleeper and likes his naps, but now I know that obviously my poor monkey is just trying to catch up with much needed ZZZZs.
At 2 ½ years old Alex is still in a cot, not a junior bed, and in a sleeping bag, instead of a duvet, because he frequently (and I mean, literally, several times an hour) wakes up at night, often crying, and tosses and turns in bed, ending up in all sorts of weird positions which further suggests he desperately tries to get comfortable and breathe. So taking the sides off his bed was just not an option, as he would fall out of bed several times a night.
Anyway, when the first consultant appointment finally came round, he confirmed that Alex’s tonsils and adenoids were huge and take up most of the space in his throat, and we were sent home with a capnocheck machine to do a sleep study overnight and to measure his oxygen saturations and carbon monoxide output. Whilst we had been briefly shown how to operate the machine and how to attach the various sensors to his finger and nose, I did think that I had done it all wrong when the readings started to show up on the screen.
Alex’s oxygen saturations were coming up as the low 80s, 70s and even as low as 60 (I understand that anything above 97 is considered normal), and his heart rate as very raised. I sat next to his cot, watching the screen on and off, for over three hours before I left it on for the rest of the night, and I honestly didn’t believe these were the actual readings. I assumed I had done it wrong, and when I returned the machine the next morning, I told the nurse – rather irritated - that the sleep study hadn’t worked at home and that they will have to get us in as in-patients for an overnight appointment at the hospital and have the professionals do it. She said she would see whether there was any usable data and she would pass on any results to the consultant either way.
A few days later we had a letter through. And it confirmed all the low readings that I had taken as faulty and diagnosed Alex with a severe case of obstructive sleep apnoea. We were urgently referred to an ENT consultant to discuss an adenotonsillectomy (the removal of his tonsils and adenoids).
At that point we were desperate to get this sorted for Alex. I think knowing just how low his oxygen levels get and how much his heart strains made it worse and made us even more worried about him at night.
I tried to enquire how long we would have to wait for the appointment with the ENT consultant – and what the parameters of “urgent” are, and I was told that it could be as little as four weeks, but could also be more than eight (just to get an appointment), and then a further wait of several weeks for the approval of funding and actual operation, so we could be looking at another four to six months.
It was then that we decided to get it done privately. We just wanted make Alex better and stop him straining so much at night. But much to my surprise I was told on enquiring that none of the big private health clinics do this operation on children under three years of age. In fact, no private clinic anywhere does it. Back we were to square one, and back on the NHS waiting lists.
We were feeling pretty deflated, panicked and helpless by then, I have to admit. There was literally nothing we could do to make Alex better.
Thankfully - and to give the ENT department at the children’s hospital credit where it’s due - they did end up being speedy. Four weeks after the referral from the respiratory specialist we saw the ENT consultant last week, and he just took one quick look at Alex’s throat, the medical report and sleep study results and instantly approved the funding for the operation and has fast tracked us. Alex’s operation is now in less than two weeks, just under three weeks from seeing the specialist, and I am so so relieved – and absolutely petrified at the same time.
It’s quite a big operation for such a small child, under general anaesthetic, and even the thought of putting Alex under, handing him over to the team of surgeons and medical staff and leaving the operating theatre makes me feel weepy. Because he is so small and there is a risk of bleeding, we will have to stay a minimum of one night, but I’m actually glad about that. I would rather Alex stayed under the observation of medical professionals post-op than not.
I’m just trying to focus on the fact that this is a necessary operation, not something we choose to do, so there isn’t a right or wrong decision to make for us as parents. It’s out of our hands.
The consultant has assured us that the success rate of these operations is very high, and that hopefully, once everything has healed, Alex’s sleep – and with that his quality of life – will be much improved. This definitely gives us some comfort.
But right now, I can’t focus on much else than the operation and how it’s all going to go. And I’m so so scared. I know that there are worse things he could have, I know that, and I am eternally grateful and thank the stars every day that he doesn’t have a far more debilitating or life-threatening illness. But that doesn’t take away from the fact that the last few months have not been nice, especially for Alex, and that the next few weeks will be difficult. Alex will be in pain for several days, something that’s never easy to witness when it’s your child, and he won’t be allowed to nursery for two weeks due to risk of infection. It’s not something I envisaged having to go through with my little baby.
I just hope and pray that my boy will be ok, and that we can put this behind us asap.