Guest post by Lui Sit
The #NotNeurotic series is published in partnership with BetterYou, whose sponsorship enabled me to pay Lui, and four other writers from under-represented backgrounds, for their contributions. You can find more information about BetterYou, and their new Madeleine Shaw range of family health supplements, at the end of this post.
I hold my wriggling seven-month-old in my lap as the GP asks me the same questions as before:
“Is she eating?”
“Is she sleeping?”
“Has she got a rash or fever?”
“When she coughs, does she bring up any sputum?”
And I answer the same way I have done multiple times before.
“Yes. Yes. No. No.”
His blue eyes blink before he turns back to his computer, inputting whatever shorthand GPs use for anxious new mothers who bring in their babies to see him too often. I feel crusted over, weary from the labours of motherhood plus the additional fact that Molly has had a cough for several months. Each night I brace myself for the sound of her coughing, followed by groans and snuffles as she attempts to get herself back to sleep while I lie rigid, unable to do the same for myself.
I’m only half listening as the GP assures me that he is not concerned, that coughs are very common in a baby’s first winter, the exposure to germs a necessity to build up her immune system. As we leave the building, I wonder if it is lack of sleep and parenting inexperience that is turning me into a zealous mother, over sensitive to every sniffle that Molly emits. I lecture myself to adopt the self-same stance of the GPs and ignore the niggling feeling inside. After all, I am a brand new mother, what do I know? Before I had Molly, I’d never even changed a nappy.
However, her coughing persists and unwilling to do nothing, we are back at the GP surgery a few weeks later. This time, to prove I am not a fantasist, I have video recordings of Molly coughing which I show to this latest GP.
“That doesn’t sound good, does it?” she murmurs, looking from the baby spluttering on screen to the one gurgling in her office. After the usual examinations showing nothing untoward, she suggests I try daily physio, which translates to sitting in a steamy bathroom, dangling Molly across my thigh as I tap between her shoulder blades.
“It will help break up mucous in her airways,” the GP explains, despite there being no evidence of any mucous in her airways.
In the absence of any other solutions, I start this regime, spending time every day in a steam clogged bathroom with Molly, patting her back. As months pass with no improvement, other GPs prescribe steroid inhalers, antibiotics; all the while assuring me that her cough is nothing to worry about. I have no recourse but to believe them but, while my head nods, my feet wear a groove in the path leading from our house to the doctors’ surgery.
Molly’s life before her cough faded like the UK summer sunshine as the winter months grabbed hold and her coughing worsened, but the search for an answer yielded no returns. Our local GPs were sick of the sight of me and the feeling was mutual. We had hit a dead end, exhausting all options on the NHS system which determined that nothing was wrong.
But the niggle inside remained, making me push on.
Fortunately, we had private health cover through work, enabling us to see a private paediatrician. I enter his office hopeful and leave disgusted. He does not bother to hide his patronising, bored manner during our consult – but, for the sake of being seen to do something, prescribes allergy testing for dust and lactose. When the results come in, it shows Molly has been tested for fish allergies. I call his office about the mistake.
“We can do the tests again,” says his secretary, “but it will be a new procedure code.”
I decline the offer to line her boss’s pockets and hang up. We try another private paediatrician but this one requests our credit card details before even letting us into his office and, once we get in, the outcome is the same.
Nothing is wrong.
At my wits end, I fall ill myself and stay that way for months.
By luck, a friend’s flatmate is a GP and, hearing of our plight, offers to see Molly. My husband and I are in his clinic a week later, watching him examine our daughter.
“I can’t see anything wrong,” he announces, as my heart sinks, “but something must be because you have seen so many GPs for so long. I’m going to refer you to Dr Cough Expert.* He’ll find out what is going on.”
An unfamiliar sensation pricks beneath my skin as my adrenaline spikes, rippling through me like wildfire. Somewhere inside, hope emerges because here is a GP who believes me.
After that, things move swiftly. At our first consultation with Dr Cough Expert, his bespectacled face reminds me of my favourite uncle but it is his manner that wins me over. He speaks to me as an equal and actively listens. His comments are insightful and concise, and he answers my many questions with patience and no condescension.
By the end of the appointment, he has my trust and I know that he will be able to help us. I’m right, for under his care Molly is diagnosed with aspiration caused by mild bulbar palsy. In short, fluid was going the wrong way, into her lungs rather than just her stomach, causing the coughing. She was 16 months old at the time. It had taken us a year to find out what was wrong.
Because something was wrong – despite many medical professionals insisting otherwise.
It still bewilders me that none of the GPs at my local surgery thought to refer us to Dr Cough Expert, a local NHS consultant who is so well known for his expertise in dealing with paediatric respiratory conditions that, when we travelled overseas, even the GP we saw on holiday knew of him!
Molly is now nine and the days of bulbar palsy are behind her thanks to the guidance of Dr Cough Expert. Despite mild asthma, her coughs now really are winter coughs, yet I still flinch whenever she has a coughing fit, my body stiffening; a leftover reaction from the days when we traipsed from GP to GP, hoping to find someone who could help her.
There are no easy answers to making the process of getting a diagnosis easier. In our case, it was down to luck that Molly received the care she needed. But it should not be down to dumb luck and a parent’s persistence in the face of being told, in not so many words, that she is overreacting. It should not be that hard for a baby to get correct medical help.
Maybe active listening needs to be included in medical school training? Because in my experience, that was the difference between being dismissed and being helped.
The act of listening.
You can find Lui online and on Twitter @Lui_Loowee_Sit
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