- Milly was irreversibly brain damaged by ‘the new thalidomide’
- Her mother was prescribed with sodium valproate to control epilepsy
- As many as 45,000 babies in the UK have been affected
Sometimes, on a soft grey morning, there comes a surge of happiness so intense that for a few, fleeting moments, all is right in my world.It is a treat, frequently indulged, for my grand-daughter Milly to trot down from her home upstairs to my granny-flat and to sleep with her nan, in my old brass bed. So I wake to wide eyes, just inches away, and when they meet mine, a beam crosses her face to light the skies.
Milly, as every three-year-old should, starts her day with a smile and ends it with a song. Two rounds of my off-key rendition of Summertime? She loves it.
It could almost be perfect — except that it isn’t. And it won’t be. Not ever.
Milly is profoundly, irreversibly brain damaged. She was poisoned by a drug that some call ‘the new thalidomide’: for what thalidomide did to unborn limbs, sodium valproate does to unborn brains.
Estimates vary, but reliable ones have put the figure as high as 45,000 children in the UK who have been affected by this drug; approximately half with physical malformation and half, like Milly, with neurodevelopmental damage.
My daughter Flynn was foolishly prescribed it by a very senior consultant neurologist — who should have known better — to control epilepsy; what it also did was attack her baby, killing and mutilating brain cells, delivering Milly into the world already disabled beyond cure.
At first, we didn’t know this. We marvelled at the new baby, as every family does. Then, from her first birthday onwards, came little signs. She didn’t eat as others did, nor walk, nor talk. We kept going to her GP, who kept swatting us away; children, she declared, ‘develop at their own pace’.
But years of investigative journalism leave their mark. I began to research. Valproate leapt out; we returned to the GP with renewed fears; we were swatted away, again.
So, shaken by sudden isolation, we let battle commence.
On personal advice from a professional friend we discovered that if let down by a GP, ‘you can always go to a health visitor instead, you know’.
Actually, we didn’t know. Because what people like us don’t know is anything whatsoever about asking the State for assistance. All I believed, to my core, was this: in our country, if a child is hurt, you ask and someone will help.
Oh, how naïve can a grown woman be?
From the start, the legwork was mine; I have time during the day that Flynn and Paul, Milly’s father, do not, simply because they work all the hours they possibly can to help fund Milly’s uncertain future.
They can, at least, stagger their schedules so one of them is at home as much as possible. And when they’re not there, I am.
So much of our time together, thanks in great part to her heartbreakingly willing personality, is spent like any other child’s time with a nan who loves her.
Books are out of the question — she just eats them — but we watch Peppa Pig, and another programme called Ben And Holly; on an energetic evening, I’ll stick on the Sixties hit, Let The Little Girl Dance, and we ‘jive’ till we drop. But, always, some silly reminder comes to crash the party.
Last night, for instance, it was seeing her push my iPad button for Peppa Pig and, by accident, happily watching a version recorded in Spanish. With exactly the same rapt attention she gives the English one.
Not, sadly, as proof that she knows Spanish — but as confirmation that she hasn’t, yet, understood a word of the English version.
And so to work. I found a general health visitor number, and then came the first of — very few — lucky breaks, when the phone just happened to be answered by Jackie.
From that moment to this, Jackie has been fantastic. Milly and I met her; Jackie assessed; Jackie got it. She made a heap of specialist referrals, but she warned: ‘This is only the first step,’ she said. ‘It’s a long road.’
I determined, forthwith, to make it shorter. While waiting for appointments, research continued; I read and read, and wrote to experts far and wide seeking advice, prognoses and miracles.
One dear, distinguished professor replied by telephone. His advice: valproate children must all be ‘statemented’. (We’ll come to that.) Prognosis: no, she will not ‘catch up’ with her peers, ever. Miracles: forget it. Thus, even though Flynn and Paul would cling to hope, quite understandably, for a little longer, it was with icy certainty that I came to know the unbearable truth.
The first thing you face — everyone says this — is a kind of bereavement. It doesn’t matter how much you love the child you hold, how much you wouldn’t swap her for any other child in the world, you can still miss that other child that she might have been, and all the other dreams that left with her.
It’s not just the big things. I admit, I was a colossal intellectual snob (this is one heck of a way to get that knocked out of you!), but I relinquished the Nobel Prizes, on Milly’s behalf, with relative ease.
It’s the small things you mourn, and keep mourning.
Most three-year-olds, for instance, thrill to the jangle of Christmas. Milly has just passed a third Christmas that she did not know even happened. We decked the halls, we trimmed the tree, we sang the carols with an enthusiasm defying despair.
Milly? It meant nothing at all. Neither had her third birthday, a month before. Nor can Milly look forward to a treat. Her trampled mind means she has no anticipation, no ‘tomorrow’. The same thing may happen every day — like Mummy coming home from work — but she’s always delightedly surprised to see her and equally delightedly surprised to have her nanny, Daisy, take over in the morning.
Slowly, therefore, you re-evaluate everything you planned and, in the end, it came down to this: Milly will never read Shakespeare. But: she’s lovely and she’s happy.
So we picked just two goals — one, to keep her that way and two, to maximise whatever potential for independence she might yet have. Not much, is it? I mean, if you had the power to do that for Milly, you would, wouldn’t you?
I ask, because I was about to learn that the people who do have that power to do something won’t help.
We knew, of course, that to achieve our two goals meant finding the right school for Milly next year — and so we turned to what the professor had called ‘statementing’.
This, as we understood it, meant you go to your local authority and they make a formal assessment (Statutory Assessment, in the jargon) and then they write a legally binding Statement, which guarantees the ‘resources’ to make things . . . better-ish.
For a learning disability as grave as Milly’s, for example, it should involve the appointment of a learning support assistant to guide her, one-to-one, a hand to steady her throughout the day; but that does require funding in addition to that generally allocated to a school.
Well, that didn’t sound too hard. People like us, we can follow instructions. So I phoned our local authority, Haringey, for an application form to start the assessment. I didn’t know, then, that the woman I asked — whose name was Janet — was a big-wig. And I didn’t expect her irritable question as to why I wanted the form.
‘My grandchild,’ I began, ‘she has, b-brain-damage’ — my voice tends, still, to wobble on the words — ‘and we think she’ll need, um, help . . .’Let me ask you another question. If anyone, anyone at all, said that sentence to you, what would be the very first words out of your mouth? You’d say — wouldn’t you? — ‘I’m sorry to hear that.’
What this Janet person said was: ‘Your grandchild’s health is no concern of mine.’
The naked hostility was a slap in the face. For the first time, though certainly not the last, I remembered that Haringey is the council notorious for its failing of Baby P; clearly, when it comes to compassion in child welfare, they haven’t learnt much since. Janet snapped some more. Something about how she dealt solely with educational needs, and Milly wasn’t at school, so they couldn’t assess how she was coping, so we were wasting our time and hers.
Then, I said, we have a Catch-22. Milly can’t understand people; people can’t understand her. She can’t possibly go to school before an assessment or before extra provision is guaranteed.
How can you put a child all alone in a school, who doesn’t know — and cannot learn, by repetition — whether or not she will ever see Mummy again? Could anything be more cruel?
Tough. Janet said, and says still, that this is the way it must be done.
Later, in the Special Educational Needs Code of Practice — these days my bedtime reading — I found that she was wrong; children like Milly absolutely can, by law, be assessed before school age.
I phoned a local school head, whom I know. I told her, incredulous: ‘I’ve just been lied to by Haringey!’ She laughed: ‘Welcome to my world.’ Another head-teacher friend advised us not just to send the form; back it up, she said, with all the evidence you can.
And so, in the past year, Milly has been shunted through perhaps 20 assessment sessions. Some are referrals from Jackie the health visitor; some found by us. Sometimes they traipse through our home, sometimes we’re in an alien clinic. Not once has our stoical Milly complained.
‘Hurr-o!’, she slurs cheerfully to the next stranger; ‘Bu-bye!’ at the end.
Diagnosis has been consistent; apart from all else, valproate poisoning leaves physical signs and often brutal disfigurement. Mercifully, Milly’s are seen only by a practised eye: among them, a high forehead, behind a careful fringe.
It doesn’t get easier to hear, mind. My daughter Flynn, as steadily as she could, asked one specialist: ‘Will I ever have a conversation with my own daughter?’ His kind eyes slid sideways as he admitted that he honestly didn’t know.
As the experts’ reports flowed, the phrasing was unequivocal: ‘markedly limited’, ‘early intervention essential’, ‘speech therapy beneficial’.
And by the time we submitted our ‘evidence’ to the local authority, we’d also identified what we needed: a good mainstream school, with a learning support assistant to help Milly understand her day, so that she may enjoy and learn — as she truly does — from singing, dancing, clapping, laughing contact with other children.
Six weeks later, the Local Authority’s answer came back: no.
Not, ‘No, you can’t have any help’; worse than that. It was, ‘No, we will not even formally assess this child to see what help she needs’ — the unspoken message being ‘because if we did, we’d have to provide it’.
Ignoring almost all other evidence before them, they picked up on one doctor who had noted one thing — that Milly ‘knows’ her alphabet. So she can’t be that bad.
Indeed she does. It’s her sole party trick, taught over months. She doesn’t understand it, but she can sort of say it and so anxious was she to please this one doctor that she’d offered it up to him, a gift. Milly loves to please.
And they’d used it against her.
I kicked like a mule on speed. To one member of the rejecting panel (who hasn’t met Milly; none of them has) I raged: ‘How many three- year-olds do you know who can’t answer, “What is your name”? Who can’t understand the question, nor say “Milly”?’
‘That’s irrelevant,’ she said. Because? ‘Because that’s not one of the tests we use.’
Here’s something else horrid. Paranoia has set in because we know that the tiniest achievement noted by the authorities means Milly is compromised. Thus we live in a state of reticence, not daring to do what everyone does who loves their child: boast. We now doubt the good faith of the very people that people like us usually trust: doctors or (probably genuinely caring) therapists. Away from them, I want to shout from the rooftops that yesterday, when we’d walked home, I asked Milly what I should do next and she actually said: ‘Oben door.’
Truthfully, I’m more proud of Milly than anyone, ever: proud of her sweetness, her humour, her give-it-a-go courage, proud of how hard she tries; proud, beyond words, that she loves her Nan.
But if a professional applauds her, we instantly wonder: do they really mean that? Or are they only praising her ‘progress’ to save money?
We have achieved one tiny victory: I harangued till the Local Authority conceded five short sessions of speech therapy, a drop in the ocean against the private ones that we have already started, at a price we really cannot afford.
Last week, for more ‘early intervention’, Milly started part-time at an inspiring little Montessori nursery school, with her nanny Daisy alongside.
Daisy, who joined the family before we knew there’d be trouble ahead, and could be excused for running from it now, but who says simply: ‘I’ll be here as long as Milly needs me.’
At the school, it’s a learning curve for all, like when a teacher put something away and said she’d give it back tomorrow.
As I say, Milly doesn’t ‘do’ tomorrow; to her, the loss was permanent. Meltdown ensued.
Still, the school is absolutely terrific — but Milly will have to leave its caring, tiny classes and hands-on support next year, with no sign of any desperately needed special provision after that.
In a few weeks’ time, we shall mark the first anniversary of our struggle by appearing before a judge.
We’ll be there to beg for an order just to start the process; to make the Local Authority begin formally assessing Milly’s glaringly evident, proven needs.
We don’t want to go before a judge; it’s scary. Haringey could, at any point, have done the decent thing and spared us that.
Of course we can’t afford a lawyer and they can. All I know is that an entire year of my life, and Milly’s, has got us absolutely nowhere.
It’s all about attrition, I see that now. I see why, according to recent BBC research, only 13 per cent — and dropping — of England’s 1.7 million Special Educational Needs children ever gets a Statement. They just want us to go away, beaten and defeated.
But we’ll be damned if we will go away. Milly is too precious for us to give up now.
Yet still, sometimes at night, in our old brass bed, I don’t feel quite so bold. I gaze at Milly’s sleeping face. Brush her hair back from the creamy, smooth, tell-tale high forehead and kiss it gently.
I am so very sorry, sweetheart. Sorry that you don’t know what ‘tomorrow’ means. And sorry, too, that as things stand, Nan doesn’t know what tomorrow means, either.