4,000 dangerous mothers

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Sharon Thompson is an ex-primary school principal and now is an emerging writer in Ireland. Her daughter Victoria died in 2012 from a rare disease at exactly nine months old in Ireland’s only children’s hospice. Since then Sharon has had an avid interest in children’s palliative care, medical research, counselling and advocacy. Sharon has produced many articles, leaflets and blogs on her experiences. Lately her short stories have been published in on-line magazines and she has secured a literary agent.

Sharon speaks publicly and to the media. She gives talks to medical professionals and has contributed to national websites. Her studies with the European Academy for Patients and Therapeutic Innovation led her to opportunities in patient involvement in medicines R&D and advocacy.

Hundreds of thousands were raised in her daughter Victoria’s memory for LauraLynn, Ireland’s only children’s hospice. Sharon now campaigns for palliative services for rural children in Ireland. For the academic year 2016-2017 The Victoria Thompson scholarship will hopefully link with Galway City University’s new MSC/Post Grad for children’s palliative and complex care course. Victoria’s scholarship will provide a €2,000 bursary for the advancement of children’s palliative care in Ireland.

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Please note: this post directly examines being a mother responsible for the end-of-life care of a child, including confronting death, and the impact on mothers and family life.

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A danger is defined as ‘a hazard, threat or menace.’ The business of motherhood is very dangerous. But you’re told, ‘you’ll be fine. You will know what to do.’

Despite the pains – your child launches gloriously into the world. Lots of dangers lie ahead but you take each one in your stride. If your child cries you feel heaped in failures. When all is pleasant, you’re the greatest mother there ever was.

Perfect.

But your darling bundle cries a lot. Dangerously loud piercing screams, no-one minds except you. They sound unnatural and never-ending.

‘Your child is beautiful, healthy, thriving. Relax,’ the doctor says.

You look at your precious baby and yes – all is well. Button nose, chubby fingers and toes, round belly and beautiful eyes that twinkle over that smile when you pick them up. Then they wail non-stop and it takes many months to make someone listen.

A kind consultant says, ‘No cure, no treatment. Yes. Your child will die.’

Blink your eyes, gulp back that disbelief as he says, ‘progressively worse. Will lose all abilities. Tube fed. Drugs. Seizures.’

Hold your child’s precious head where all conscious thought is disappearing and smell their hair. No amount of crying, praying or hoping changes the words, ‘It’s rare. Their life is limited. We’ve not got many answers.’

You’re told by all, ‘home is the place to be.’

You want to go home and hide in the duvet, leave the cruel world. But of course all will be safer at home. In the downstairs living room your partner and yourself make a hospital ward. You fill in forms, make hundreds of phone calls. Reality sinks in. You write down and ask all questions you can think of. You google and research like the FBI.

Still the professionals tell you, ‘your child will probably die in the next year or two.’

Exhausted you sleep with one eye and ear open as it’s twenty-four hour care.

‘Charities can be helpful. But nurses are very hard to find and aren’t specialised.’

There’s no time to cry. Hourly there are medicines and feed schedules. The days and weeks are full of appointments and tests. The other children, a grieving husband and extended family all rely on you. The job you love had to go. Your financial situation is dire but you cannot think about that as well as everything else. You’re dangerously close to the edge of reason every day.

But you smile and say, ‘I’m fine.’

The outside world is inaccessible – your child is too sick to take them far. People don’t know what to say. No-one can babysit. When you do chance a nip to the chemist acquaintances cross the street to avoid you, while others rush to hear the latest gossip or to tell you about God’s plan.

So – Your child and yourself are alone. Tired beyond measure you’re surrounded in scary, essential equipment. Things like feed pumps and machines that beep. You hate it all but had to fight tooth and nail to get the cumbersome stuff.

You haven’t seen a nurse in weeks and the only one you trust is pregnant. You haven’t slept even when she’s downstairs. There’s no sleep if you hear your child cry.

Medication occasionally stops the screaming. The guilt hurts you physically when you inject drugs into the tube in that little nose. The doctors finally gave in to your pleas and prescribe stuff trialled only in adults. Despite the medication reaching that tiny tummy, the screaming goes on and on. Torturous roars no-one told you about. No-one mentioned the pain you’d witness. How the feeding tube would make your child live to suffer on. There was no talk of the ache you’d feel in your soul until it became almost ‘normal’. The doctors hundreds of miles away are good but time is limited at appointments and there isn’t one for another month. There’s no emergency helpline.

But you’re fine.

You’re together. That’s all that matters. There in your living room. Suddenly – There’s a new scream. It’s loud and shrill. Unusual in its pitch. It startles you, worries you. The feeding tube definitely isn’t blocked. You stop the feeding pump as your child starts having a seizure. There’s little you can do but give more drugs. But you’re not totally sure if you should give them on top of the others? Through tears you watch and pray.

In the months since the doctor shook his head, there’s not been much discussion about this scenario. The last time you rang the ambulance you were months in a hospital miles away from your other children. The local hospital and doctors are overwhelmed by your child’s condition. You’re eight hours round trip from the only children’s hospice in the country. There are no trained palliative nurses in your area – despite your pleas for nurse training.

Your child’s limbs stop moving. There’s nothing, no noise and they go blue…

Definitely your child cannot breathe. You know the positioning and suctioning that usually works. You try all your tricks. It isn’t working. They said you wouldn’t need oxygen! Nothing is working. You shout your child’s name and nothing…

The phone is your hand. Who do you call? Your husband is at work and is exhausted. The kids are at school but will be home soon. How will you explain their sibling is not breathing anymore? The house is upside down and although you luckily have a car – your aging parents get traumatised by your child’s illness.

You’re alone.

        ‘Pray for a miracle,’ people say.

Definitely your child is not breathing their skin is looking paler and more peaceful. What will you do? What can you do?

The tears are falling now. You’re lost…. You whisper their name and your child takes a large, deep breath. They’ve returned. Their eyes are closed as usual, but yes – they’re breathing in that usual croaky way they have. Relief. This is relief you feel isn’t it?

This will happen again you know it will. But when? How? Will they be screaming in pain next time? Will you know what to do? Will it be at a time when you finally have a nurse? It’s right to want your little one here with you always –isn’t it?

There you are, sipping your cold tea, watching your child’s thin chest move up and down.

Are you fine? Do you know what to do? It’s your life, your child – how dangerous are you?

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Pity and sympathy does not honour these dangerous women. They confront the most dangerous thing in their lives daily. Mothers who are told their child will die are so dangerous society doesn’t even give them a title. There is no word for a parent who loses a child.

Until recently in Ireland, the mothers of life-limited or terminally ill children were not even counted. In 2015 it was estimated by Devins, Quinn & Ling that there are 4,000 mothers of life-limited children in Ireland. This figure is 32:10,000 of women who give birth.

In 2005 a national needs assessment was done and the ‘preferred place of care for life-limited children is at home.’ Considering there were and still aren’t any alternatives – this is an interesting finding. Despite this apparent ‘choice’ only 11% of seriously ill children die in the home. So most return or try to stay in busy wards where they can feel they’ve failed somehow to cope at home. This mantra of ‘home-care until the end’ is all very well until you’ve lived or contemplated the realities of it. True palliative care offers choices, support and safety.

I myself surveyed 36 mothers of life-limited children. One question stood out. ‘Do you feel you can cope at home with your child’s condition?’ 34 mothers out of 36 said – ‘No.’ One asked me not to ask that question.

Due to parents highlighting their plight, there is one palliative paediatric consultant for the entire country and eight national outreach nurses for vast geographical areas. Some areas still do not have one of these nurses.

We would gasp at women giving birth on their own yet still in Ireland mothers are expected to watch their child die at home. Many women struggle alone, as their partners leave.

Wanting and demanding that your child’s life and death is as safe as possible should not be considered dangerous. Yet in 2016, these women are supposed to cope alone, with meagre charitable supports and when it’s all over – they’re expected to disappear and be silent. These women are expected to no longer be dangerous.

 

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Further reading

LauraLynn – Ireland’s children’s hospice.

Irish Hospice Foundation.

AIIHPC information on children’s palliative care in Ireland.

Ireland’s national policy on palliative care for children.

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