Features

If I’d done what the GP had suggested, my child would now be dead
Evening Standard, 8th October, 2002
By Stephanie Zinser

One writer tells why she took her family’s health into her own hands by seeking a second opinion

Standing on the pavement outside a Harley Street consultant’s office, sobbing openly as I cradled Emily, my six-week old baby, I struggled to take in what had just happened to me during a constultation with an eminent gastroenterologist. Not only had I been left lying on the examination table with a plastic tube sticking out of my backside while he left the room to take a personal phone-call, but he delivered his medical verdict without compassion: I’d die of bowel cancer within 10 years, and must stop nursing my new baby immediately because of the powerful and debilitating drugs I needed to take.

I’d been referred because of bleeding and diarrhoea that started during the pregnancy. Having eliminated haemorrhoids, my GP then suspected proctitis, an uncomfortable (but not life-threatening) problem where the end of the colon becomes inflamed.

I hadn’t expected a death sentence. And I certainly hadn’t anticipated humiliation by someone who ought to know better than treat his patients with a lack of consideration that bordered on contempt.

As I slowly composed myself, my desperation turned to anger and I decided that this man was not going to ruin my life. I wanted a second opinion, but asking wouldn’t be easy. I valued and trusted my GP’s judgement. What would he think when I poured scorn on his choice of consultant? I was sure he wouldn’t believe I had been treated so brutally – after all, he was a renowned expert and I was an ignorant patient. I worried that I’d be branded a troublemaker, and fretted for days.

So when I next saw my GP, I kept it brief: I wasn’t terribly comfortable with that consultant, and could I please see someone else? He agreed immediately and without further probing. What a huge relief.

The next consultant was completely different. He gently explained that my condition – confirmed as proctitis – could worsen, but rarely did. With good management and certain drugs I would continue living a relatively normal life. As I write this – 14 years later – I am quite clearly still alive. Emily is now a beautiful teenager. My condition did get worse. It developed into full-blown ulcerative colitis and my entire colon was removed four years ago. Unlucky perhaps. But a supremely skilled surgeon restored my health, and life today is better than ever.

I am so thankful that I had the courage to ask for that second opinion all those years ago otherwise I just don’t know what would have happened to me. Living with an apparent death sentence could have destroyed my will to live. The trouble with second opinions is that you ask for one because you are dissatisfied with the consultant, the diagnosis or the treatment on offer.

You are registering disapproval. And most of us hate to complain. What if someone takes offence? What if they refuse our request? What if they label us troublemakers? What if we are struck off their list? There are – even today with the Patient’s Charter – many reasons we can be loath to seek one.

When Emily was five years old, I took her to a GP because, on occasions, she behaved bizarrely. She would go to sleep as normal, but the next morning I wouldn’t be able to rouse her. This normally bubbly and intelligent girl was transformed into a drooling, unresponsive heap who appeared to be severely brain damaged.

She didn’t know her name. Her glassy, rolling eyes could barely focus, let alone recognise me. Her head flopped to one side, saliva dribbling from the corner of her mouth. She couldn’t speak. I would sit her up and try to force-feed her some juice and after a few clumsy swallows, she would start to rouse. Within minutes, she was bright and alert as normal, completely unaware of what had happened.

This GP, a fairly intimidating man by reputation, was not my regular doctor. Although he didn’t even examine Emily, he told me I was a neurotic mother, and said that she was simply seeking attention. I was given a patronising lecture and instructed that the next time this happened I should leave her alone. She would soon snap out of it. Trusting my parental instincts, I knew this wasn’t right. Emily wasn’t an attention-seeking child. No child, no matter how troubled, could even begin to act as frighteningly as this. But I was too scared to say this to him. With my heart pounding I sidled up to the reception desk and nervously asked to see another GP. Although more receptive, this second doctor was also reluctant to send Emily to a specialist. I eventually cajoled a referral from her, but later felt guilty in case I really was wasting these doctors’ time. I started doubting my instincts. However, Emily ended up at Great Ormond Street Hospital and underwent intensive investigations by a top-flight paediatric endocrinologist. His conclusion? She had a rare blood-sugar disorder that meant she could – in certain circumstances – slip into a coma overnight, a life-threatening situation.

Her disorder was so rare it didn’t even have a name. They could only bracket it under the general umbrella of “ketotic hypoglycaemia”. I was told Emily was very lucky that I ignored the first GP’s advice. If I had done what he’d suggested, she would have died.

Emily was lucky, but I was distraught. What if I’d been so intimidated that I hadn’t sought another opinion? How would I have lived with myself id she had died? The realisation that she was alive only because I was bloody-minded enough to disregard a GP’s advice was no comfort. Only the thinnest sliver of luck had spared her life. I still feel sick thinking about it. I realised that no matter how effective modern medicine is, the ultimate responsibility is with us – as parents and as patients.

Knowing your body, or your child’s body, trusting your instincts and finding the courage to push through the discomfort of ‘making a fuss’ are, in many case, the only things that can keep up healthy – or, in extreme cases, alive. I greatly respect and admire the work that all health workers do – nurses, GPs and consultants, and have a very positive rapport with most that I meet. But as a result of my experiences if I believe that something is wrong, I now feel more confident to stand up for my children or myself.

Eighteen months ago, I saw a back specialist after waking every night for nearly a year with excruciating back pain. At first I blamed it on our old bed, but after two new beds failed to make a difference, I sought help. I knew that my history of ulcerative colitis indicated a higher-than-normal risk of ankylosing spondylitis (AS) – an unusual disease that causes pelvic and spinal inflammation, and which can eventually fuse these bones together, immobilising your body. My symptoms fitted the pattern.

My father had had the disease. My GP did a blood test for the HLA-B27 antigen that indicates AS, and I tested positive. I didn’t think the consultation would be much more than a rubber-stamping exercise – a confirmative X-ray, followed by a discussion about the best treatment.

But I was wrong. The ageing consultant had already decided that I didn’t have AS. It was too rare. It hardly ever affected women. I was too young, my back too flexible. He disregarded my blood results, my father’s history and my ulcerative colitis – despite the strong links they all have to AS.

Could he explain the crippling nightly pains? Well, I was obviously exaggerating. He wouldn’t do an X-ray after all. Waste of time.

Dreading yet another confrontation I suggested that just because AS was rare and unlikely to happen to me surely this didn’t mean I couldn’t have it? I also insisted on the X-ray. As I waited for the film to be developed, I wondered if I’d leave with egg on my face, but by now I didn’t care. I had every right to ask, and enough reason to justify knowing.

Eventually I was summoned back to the consultant’s room, where he reluctantly admitted the X-rays did show bone changes ‘consistent with’ AS, and that one side of my pelvis was already partially fused. There was little eye contact and even less apology for having previously dismissed me. I’m sure you can guess what I did next.
I’ve had to seek second opinions three times. Once it saved my child’s life, but every incident has taught me crucial lessons.

Take charge. It’s your body (or your child’s), and your responsibility. Don’t let anyone make you feel uncomfortable when you need someone else’s advice. Trust your gut instincts. You may need to be persistent and strong, especially when you feel unwell, or overwhelmed and intimidated by doctors and medical jargon, but your actions might save a life.

And just because it’s rare it doesn’t mean it can’t happen.

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