Guest post by Clare Norton. Content warning: baby loss and bereavement

Ahead of Mothers’ Day, Hysterical Women explores the idea of the ‘neurotic mother’, whose concerns about her own health and that of her children, are dismissed or minimised. Please be aware that Clare’s story is distressing.

I don’t know how to start this piece. It’s not a story with a happy ending. It’s devastating and heartbreaking and wrong, but also not uncommon. In the era of the #MeToo movement, it’s only just being recognised that inequality exists within the medical profession.

In 1995, I was pregnant with my second daughter and was booked in for an induction. I’d had one previously, so kind of knew what to expect. A student midwife thought the baby was breech but a senior midwife dismissed this and told the student off for mentioning it in front of me. How I now wish I’d asked for a scan.

From the start of the induction, I knew something was wrong. The pain was constant, a continuous, never-ending contraction. I was crying in pain and called the midwife, who stated I wasn’t in labour, told me not to be a baby, and turned the drip up.

I don’t remember much more than a blur of horrendous pain. I didn’t even know I was pushing, my body just took over. Suddenly, the room was full of people. Lara Sian was born breech and not breathing, an hour after the midwife told me I wasn’t in labour. It took 20 minutes to resuscitate her and she was taken to SCUBU. She lived for 8 days, and then my beautiful daughter died.

A year later, I had another daughter, Merryn.

When Merryn was 15, she became ill with what we thought was a funny virus, but she never recovered. Her health deteriorated and it’s impossible to detail everything here but she went from a lively teenage girl who wanted to take on the world to being in a wheelchair, housebound, and then bedbound.

A round of hospital visits commenced. Doctors just saw a teenage girl who must be depressed or school avoidant, with an over anxious mother. Her symptoms didn’t fit with this. She wasn’t depressed and desperately wanted to do things, but couldn’t. Merryn tried to push through her symptoms but this made her relapse and worsen. She hated missing school – she loved it and saw school as a place to see her friends all day.

Merryn agreed for a mental health assessment to end queries regarding her mental health. Child and Adolescent Mental Health Services (CAMHS) agreed that her symptoms were physical and her mental health was good. Multiple hospital admissions and doctors’ visits followed, with everyone continuing to suggest it was mental health.

We were desperate for answers and found a private clinic who diagnosed severe Myalgic Encephalomyelitis (ME). They referred us to an NHS Consultant who, although out of our area, took Merryn on and confirmed this diagnosis.

ME is an illness that primarily affects females (75%). It’s a complex, multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems, often following a virus. Approximately 25% of patients are severely affected, leaving them housebound or bedbound. Of these, approximately 4% are very severely affected, leaving them tube fed, in intense pain and bedbound.

It is classified by the World Health Organization (WHO) as a neurological disease. One of the hallmark symptoms is PENE (Post Exertional Neuroimmune Exhaustion), meaning any physical or mental exertion has a detrimental effect on symptoms. For the very severely affected, the slightest exertion can have a profoundly debilitating effect – lasting for weeks, months or years. Exertion for Merryn meant speaking a few words, lifting an arm, etc.

Although we had a diagnosis of ME and an exclusion of mental health issues, this didn’t help. Merryn was deteriorating and having issues with her stomach and swallowing. Her consultant confirmed her swallowing was affected by muscles not working properly in her throat. Anything she did manage to swallow gave her awful stomach pain and made her sick. She began losing weight rapidly. Merryn agreed a feeding tube to her bowel was the best move.

But it was a fight. Her consultant was out of our area, and gastro services in our area seemed to ignore his diagnosis, still focusing instead on her mental health. We were told, “she has a feeding tube, her mouth”, and they queried anorexia.

To cut a long story short, Merryn was eventually admitted for a feeding tube. I stayed with her, as I did for every admission now. This hadn’t always been the case pre-ME; Merryn had been in hospital before and stayed alone, as she could speak for herself.

Hospital admissions were always hard, as hospital environments caused Merryn to deteriorate. We did what we could to make things as easy as possible for her. She needed to be in a side room where curtains could be closed for her light hypersensitivity and noise kept to a minimum. We always carried information about ME to help staff understand.

The tube was fitted but Merryn was unable to tolerate more than 5mls per hour without being in severe pain and vomiting. On her discharge, we were advised a referral for safeguarding had been made – the reason being FII (Factitious and Induced Illness, previously Munchausen by Proxy). I was being accused of causing Merryn’s illness. When the social worker visited us, we were told reasons for the referral were:

  1. I kept Merryn in a dark room
  2. I answered for her and didn’t let her speak
  3. I lied and said she was being sick when she wasn’t
  4. I thought I was an expert on the disease and carried a file with me
  5. Why did Merryn need a feeding tube when she sometimes ate?

To answer the last query first, Merryn’s ME consultant had advised that she should try to eat whenever she could. There was a letter from him stating this in the file I carried. Also in the file was information about ME, answering concerns regarding why she was in a dark room and unable to speak for herself. Their own records showed she was being sick, as the volume was measured. And yes, of course I was an expert on my daughter’s illness. I had to be and I would have been neglectful otherwise.

Thankfully the social worker had an awareness of ME. She put a formal complaint in to the ward about the referral and their lack of knowledge.

Meanwhile, my daughter continued to deteriorate. Community services couldn’t understand why she couldn’t tolerate the feed. Again, anorexia and mental health issues were queried. Eventually, at a different hospital, a diagnosis of gastrointestinal failure was made.

Merryn was now 5 and a half stone and had to be fed intravenously as her stomach didn’t work due to ME, meaning she would always need this. This helped nutritionally and she gained weight. However, she was in hospital for nine months, which caused her ME symptoms to worsen. Her ME consultant described hospital environments as toxic for very severe ME.

As I said previously, there’s no happy ending to this story. Over the next two years, Merryn deteriorated further and died at home, aged just 21. Following an inquest, her death certificate states ME as the official cause of death.

Two daughters dead, my concerns ignored or dismissed both times. I ask myself: Could I have done more? Said more? Spoken more assertively or eloquently? It’s unbelievable that this still happens. For me, it’s reminiscent of the witch trials, where drowning meant you were innocent. Death means we believe you now.