Abi’s Story: Growing Up Without a Sense of Smell
I noticed my daughter was different from an early age but couldn’t put my finger on why. She was a well-behaved toddler; fun, happy and eager to learn. The one problem we had was food. Whenever we sat down to eat, the antics would begin. She’d express disinterest in a variety of ways. Her arms would stretch. The complaints would start: “I’m tired, I don’t like this, this is too hot, this is too cold”.
It wasn’t the usual toddler behaviours of once-in-a-while playing up. This was most meal– times. I constantly worried she wasn’t eating enough.
The fun of eating out descended into tears or the consequences of bad behaviour. We had no choice other than to stop, denying ourselves this simplest of family pleasures.
At about the age of 4 or 5 it suddenly occurred to me that Abi had never mentioned smell. No, “yuk that’s smelly” after the toilet. No, “oh that smells lovely”. I noticed all her friends mentioning smells but not Abi. With that came another realisation: I had never heard Abi say “I’m hungry.”
Imagine the many ways we are prompted to think about eating, to talk about food, to say how hungry we are. Like how, when you get home and you smell a roast dinner cooking, your stomach starts growling to let you know it’s dinner time.
So I started watching out for it. I asked her to smell things, like the silage tractor that passed by on our way to school. She looked at me blankly.
Over the next few years, I researched it, speaking to friends and doctors. On the whole, I got blank faces.
The internet searches told me what anosmia was. Most of the information seemed to come from America. There wasn’t any information about anosmia in the UK. I realised that having no sense of smell was closely linked to problems with taste. It all made sense. Abi was a model pupil at school, had lots of friends, was funny and kind. The only issue was mealtimes.
I think my friends thought I was making excuses for Abi’s “naughty” behaviour around meal times.
Doctors didn’t know what to do. They gave her nose sprays (they didn’t work). I was told by an ENT doctor, “well if you had to lose one sense that would be the one.” A shocking comment to make to a child missing one of their senses. We saw ENT Consultants and they were dumbfounded, saying they had never come across this in a child. They didn’t offer any help.
We felt so alone. No one seemed to understand or take us seriously.
In the end, we gave up. We continued to work on Abi’s meal times instead, trying to find foods that she would actually enjoy.
When Abi was about 7 or 8, her friends started to make reference to the fact that she couldn’t smell. Abi felt very different and wanted to know what smell was. Can you imagine, trying to explain smell to someone who has never had it?
Then came a big moment that changed things. Abi had been out with friends. They were on their way back, in a friend’s car, when one of them held up a bag and they all started to smell the contents. Lots of ‘yuks,’ screwed up faces and the holding of noses. Abi wanted to know why. Apparently, one of the girls had left a tuna sandwich in the hot car all day. Abi’s friend said, “You’re lucky you can’t smell this, it’s disgusting.”
Abi was in tears when she came home. I asked why. She told me what had happened and said “I’m not lucky, I want to smell it and know why it’s so horrible. I can’t imagine what it is, but I want it.”
The incident prompted me to go back to the internet. I was determined to get to the bottom of this.
My first hit for ‘anosmia UK’ was Fifth Sense. I couldn’t believe it. Two years previously there hadn’t been anything in the UK. I emailed Duncan Boak (Founder of Fifth Sense) and explained my problem. He understood. It may not seem like a lot, but having someone understand after all those years was huge. He was sympathetic and told me about the Smell and Taste Clinic run by Professor Carl Philpott. I honestly felt like I had hit the jackpot. I could go to the Smell and Taste Clinic which was funded by the NHS. Yes, it was in Norfolk 6 hours drive away, but it had to be worth it. Amazing!
We had countless appointments with GPs and ENT Consultants. At one point we were on our way home from an appointment and Abi started crying. She asked why it was that the doctors didn’t understand. She thought they didn’t believe her.
I was heartbroken but as a parent it made me fight that much harder.
None of the specialists would authorise the referral to the Smell and Taste Clinic. Eventually we were directed to a paediatric neurologist. He was the first medical professional who admitted that he didn’t know. I showed him the Fifth Sense leaflet and the NHS website showing the Smell and Taste Clinic and asked him for a referral. He sent this to my GP, who in turn got the referral authorised by Dorset NHS.
Through all of this, Fifth Sense supported us, and put me in touch with other parents – I was able to share our experiences. We felt part of a community.
Through Fifth Sense Abi also spoke to a few children in similar situations. It was lovely, as she said she didn’t feel so alone any more.
Abi was inspired by the support we received and decided to give a presentation at school, a sponsored swim raising £1125 for Fifth Sense and spoke at the charity’s launch event in March 2014. Abi is now just leaving high school. She has had one little operation which gave her something like a 10% sense of smell for a few weeks. We hold out hope for a second op when Abi is fully grown. Abi will always be a member of Fifth Sense and wants to be there to help others. I always have hope that Abi will achieve a full sense of smell, but I’m aware this may never be the case. She will need Fifth Sense as she grows older for support on issues that she is not yet aware of.