Our Health Experience: ‘I often feel a rush of gratitude that there is no tiny grave in Shanganagh with her name on it’

Emily was a lively, active, bright four-year-old with a beautiful singing voice. One Saturday afternoon in October 2000 she complained of a headache and felt hot so I gave her some paracetamol and she was fine afterwards, spending the evening running up antephanie Casey with her daughter, Emily, at the One Direction concert, and right, Emily with her brother, Chris, and nephew Dara.d down the stairs.

She was still fine at bedtime and slept through the night but when I woke her the next morning I noticed a blue mark on her cheek. I took off the covers and saw that her legs were covered in blue and black streaks, as if something had run over her legs while she slept.

I guessed what was wrong and called an ambulance, telling the despatcher that I thought she had meningococcal sepsis. It was hard to speak and I had to keep repeating myself as my voice was shaking so much.

While we were waiting she began to vomit black blood. It was terrifying. The ambulance arrived after 20 minutes and I went with her, while Dermot followed behind. I have never been so afraid in my life. Emily’s lungs were filing with blood and she was falling unconscious.

I kept telling her that the doctors would make her better as if saying it often enough would make it happen. But Dermot knew that our lives would never be the same again.

Team waiting

When we got to Crumlin there was a team waiting at the door to start trying to save her. She was quickly moved to intensive care and it was confirmed that she had meningococcal sepsis caused by Meningitis B and the consultant advised us to call in the family and prepare to say goodbye.

But on the fifth day Emily's vital signs stabilised. She had multiple brain bleeds after that and was in a coma for weeks, in Crumlin for five months, and she went on to spend a further 15 months at the National Rehabilitation Hospital (NRH).

The heroic efforts of the medical teams succeeded in saving Emily’s life but she was left without muscle tone and with her legs in danger of amputation, so she had operation after operation to graft skin cover onto her thighs, shins and ankles. She was also left with a brain injury.

At the NRH, she had daily speech therapy, which was like brain surgery from the outside. She had tough physiotherapy sessions every day, with lots of tears and despair. She had occupational therapy too as she needed to learn fine motor skills again. Gradually the therapies began to show results.

Emily was admitted in March 2001 and in June 2002 she was discharged as she could speak, crawl and use a walking frame and, in the autumn of that year, she had the first of two reconstructive surgeries on her legs – to lengthen and reconfigure the bone.

Complications

Since 15th October 2000, all our lives have been defined by the steady stream of complications caused by meningitis. Leg braces, epilepsy, learning disability, scoliosis, body braces, surgery for Harrington rods, surgical catastrophe, spinal cord injury, urinary sepsis, faecal impaction, UTIs, paralysis, wheelchairs, standers, exercise equipment and more.

Then in 2009, she spent a further four months in Crumlin after suffering a complete spinal cord injury. After discharge, she went to NRH for another eight months of rehabilitation.

The combination of spinal cord injury with acquired brain injury caused a huge increase in Emily’s care needs. She became much more dependent and is a full-time wheelchair user – she is completely paralysed from the chest down, has double incontinence and needs more care than ever before. I am Emily’s full-time carer and because Dermot has an income, I don’t qualify for carer’s allowance so have been unwaged for 15 years.

Her needs have increased so much since 2009 that I am literally nursing around the clock. I have had to attend counselling to cope with feelings of despair and anger and am permanently exhausted, which leaves me feeling sad for my husband and other children who must make do with much less of my care and attention.

It is the extraordinary support from our family and community that makes everything possible and bearable. They have all done so much, worked so hard, helped in practical, creative and imaginative ways. They have brought fun back into our lives.

We know we are blessed to have their constant love and care, and our local church and community have fundraised to get extra rehabilitation equipment for Emily as she is a cherished and very well loved citizen of Dalkey. This is the silver lining and it is beautiful.

And so is Emily.

She is a precious gift in our lives and every day is a bonus. I often feel a rush of gratitude that there is no tiny grave in Shanganagh with her name on it. She faces every day with courage and mostly in good humour despite the struggle and enormity of her disabilities.

But I would urge parents to campaign for the vaccine against Men B, shout loud to the Government and the HSE. Men B is lethal and survivors face a lifetime of suffering and disability.

Emily herself often speaks of how much she would have loved to have lived a “normal” life.

But this suffering is avoidable today because there is a vaccine. Nobody has to have this happen to their child or to their family again.

Right now I can’t bear to think that every month we delay including the vaccine in the primary vaccination schedule means more deaths and lifelong casualties, more devastated survivors and exhausted families. There will be tiny graves (and bigger graves) and lifetimes of suffering. The cost is overwhelming in every way, not least financially.

Emily and the rest of our family cope, with difficulty, but it would lighten our load just a bit to know that the vaccine is being given to every child in Ireland.

For more information visit www.meningitis.org