What a difference a drug makes

I’ve often joked that Benjamin is my easiest child. At least, alongside a five-year-old who will burst into tears if you suggest she watches CBeebies instead of Youtube (or, God forbid, actually turn the TV off), and a one-year-old who will literally climb the furniture to get at anything she shouldn’t have.

He doesn’t answer back. He doesn’t scribble in Sharpie all over the sofa, or helpfully make a trail of wood shavings from the guinea-pigs’ hutch to the kitchen. In fact a lot of the time, day or night, he’s barely awake…


‘Just resting my eyes’

Maybe he exhausts himself working against his dystonic muscles? Maybe he’s out of sync, and waking lots during the night? Maybe he’s not really sleeping, he’s just pretending so he doesn’t have to do anything he doesn’t want to? He certainly seems to have a stubborn streak (no idea where he gets that from). No matter how much you try to wake him up, he just won’t have it. His heart rate drops and his temperature with it. He’ll sleep for 48 hours, wake up for an afternoon, then doze off again before bed-time. Keeping him warm with blankets, hot water bottles, body heat or whacking the heating up to max helps a little. Nothing seems to stir him.

Well, change is in the air – or in a little packet of pills. One simple drug has made him into a different boy! Based on some slightly anomalous blood results during previous hospital admissions (par for the course with Benjamin, who has never had a normal result in his life), a couple of months ago we were referred to yet another team (on top of neurology, respiratory, gastrointestinal, ENT, haematology, immunology, and the enigmatic ‘medics’): endocrine. The hormone doctors. They did several more blood tests and – surprise surprise – most of Benjamin’s results came back ‘borderline.’

One of the tests that came back borderline was a marker of the functioning of his thyroid gland. The thyroid produces hormones that, among other things, increase the metabolic rate, speed up the heart, increase body temperature, and regulate sleep.

So, just as an experiment, Benjamin has been prescribed a small daily dose of one of these hormones – thyroxine. And – once we’d explored with the gastro team how exactly to give the tablet through a feeding tube (guess what, they’ve never had a child like Benjamin needing this drug before… ) – the results have been astounding! His heart rate is no longer clinically low. His temperature is practically normal (as we come into winter that’s a big worry off my mind). And he is awake! He now maintains a relatively regular sleep cycle – he sleeps at night, has a nap around the middle of the day, and a lot of the rest of the time he is awake!


‘Morning everyone!’


‘Just because I’m awake doesn’t mean I have to be happy about it’

Crucially, being awake means Benjamin is aware of what is going on around him. He can observe, interact, and learn. His latest report from preschool reads: “What a difference in Benjamin this term! Benjamin … enjoys play experiences and interactions with his peers … has been showing clear signs of engaging more with those around him. He appears much more alert and aware.” And, as they continue, “When well and alert, Benjamin can explore cause and effect. There is more body language and less passive behaviour.” I’m sure we all often wish we had a few more hours in the day. Benjamin has literally gained a few more hours every day, thanks to one tiny tablet, and with pretty minimal side effects (just don’t mention the nappies).

And being more awake means he’s (ever so slightly) more mobile, more able to clear his secretions, more able to keep his feed moving down in the right direction. This is one of a number of small changes – regular chest physio, prophylatic antibiotics, the switch to a G-J tube which has dramatically reduced his reflux and consequent aspiration of feed into his lungs – which have helped keep him out of hospital (touch wood) over the summer. Now we just have to see if they will be able to hold firm against winter’s onslaught of bugs (touch more wood… can I get some more wood from somewhere?).


Thank goodness for Shane the log-man

He’s still my cuddly, snuggly boy, but now we also get to see his beautiful brown eyes! We often even get a wave and a smile. Yes, he’s still tired and grumpy by the end of the day (show me a preschooler that isn’t. Or preferably a five-year-old, an eighteen-month-old and a husband). The drug deemed ‘worth a try’ has turned out to be the drug that’s making all the difference, not just to Benjamin’s health, but to his development and enjoyment of life.



The best of both worlds

It’s a common complaint among carers of children with complex needs: I spend so much time being a nurse, being a therapist, I sometimes don’t get a chance just to be a parent. I don’t want only to interact with him through a feeding tube, a syringe, and a set of physio exercises in a pair of uncomfortable boots; I want to play with him, cuddle him, enjoy him like my other children, take his boots off, rub his feet and stroke his hair.

So much of our day is taken up with Benjamin’s immediate medical needs – chest physio, suctioning, administering medications, giving tube feeds; not to mention his personal care – nappy changing, dressing, bathing – that sometimes the benefits of longer-term therapy seem so far off, so intangible, particularly for a life-limited child, that it gets pushed to the end of each day and then forgotten.

Don’t get me wrong. I appreciate – so much – the guidance of our physio, speech and language therapist, community nurses and visiting teachers. I am so grateful to be able to keep Benjamin at home rather than in hospital. And I do want him to be the best he can be, now and in the future, of course I do. But sometimes I just want to be his mum.

What if there was a way to do both?

A way to do therapy that had immediate impacts as well as long-term benefits? A way that integrated therapy into everyday life? A way that combined therapy with play, and with communication? A way in which ugly equipment has its place, but sitting together on the sofa can be just as useful? A way in which tiny changes can make a big difference?

We’ve just spent six gruelling weeks travelling back and forth through the roadworks on the M8 to Glasgow’s Bobath Cerebral Palsy Centre, to take part in their Big Lottery-funded, Right Start Programme for children aged 2-5.

We did learn exercises we can do with Benjamin on a ball, on a bench, in a stander, when we want to and he wants to and we have time. But we also learned how to warm him up before exercising, so that he gets the maximum benefit with the minimum effort. We learned how to challenge his head control when picking him up, how to raise his awareness of his own hands whilst putting his jumper on, how to stretch out his hamstrings while changing his nappy, how to relax his fists while washing his hands. In short, how to be a mum and a therapist at the same time, without even thinking about it.

We learned how to use our own bodies to support him in different positions – how boobs and a belly can be more supportive than a chair and more responsive than a ‘memoryfoam’ mattress. How to do ‘peekaboo’ or to pretend we’re going to let him fall then catch him. How to play, or sit together, or even watch TV together, without feeling guilty that we’re wasting therapy time.

We learned how small changes can make an immediate difference. Simply checking his posture, rolling his shoulders back and opening out his chest when he’s seated in his chair or in his buggy can set off a chain of muscular adjustmentsthat help him to hold his head up better, to control his eye movements, and ultimately to interact more meaningfully with those around him (if, that is, he can see past his fringe). Immediate rewards that provide the impetus to keep going even when the long term goals seem so distant.


It’s not rocket science. In fact I’m sure most of the things we learned could have been taught by our NHS physiotherapist or speech-and-language therapist. But the six weeks of intensive contact time we spent at Bobath would take them maybe a year to achieve with their overfilled, underfunded schedules, and it’s harder to make progress without momentum.

In actual fact, I don’t think we’ve even scratched the surface of what Bobath has taught us. In the thick of an intensive course, with three hours’ driving for each appointment, on top of two days’ nursery a week and the usual hospital appointments and home visits, none of us – least of all Benjamin – really had the energy to get home and practice much more than a few stretches before bed. But armed with a DVD and a personalised instruction manual (complete with comedy photos of Benjamin and I in all sorts of positions) I hope over the weeks and months to come we’ll be able to build on the improvements we’ve already seen in his head control and visual focus, his more relaxed hands and body awareness.

I can’t thank the team at Bobath Scotland enough, for putting up with me and my army of grubby children, for supplying a good cup of coffee each morning, for treating Benjamin with respect and for believing in his potential, and for encouraging me to cut his hair.


‘If only there was always a nice lady to hold my hair out of the way…’

The Bobath Scotland Cerebral Palsy Centre is based in Glasgow. Their Right Start Project is funded for five years by the Big Lottery Fund. But they rely on fundraising for 85% of their income in order to keep doing the work they are doing across Scotland, from the Highlands to the Islands, supporting the 15,000 people in the country with cerebral palsy and related conditions. If you’d like to support their work you can donate £5 by texting HIGH05 £5 to 70070, or you can find details of how to donate at www.bobathscotland.org.uk/donate.

Brought up short

She pulls her knees right up to her tummy, froggy-style, then kicks them straight again, quickly, over and over, learning the strength in those chubby little thighs. She’ll be rolling over soon. His legs are sometimes floppy, sometimes tense and rigid. He doesn’t move them voluntarily; they will likely never bear his weight.

She brings her hands to her mouth, sucks on them, explores the fingers one by one. His hands never enter his own line of vision. He looks straight ahead; his hands remain by his side like a soldier standing to attention.

She waves her arms furiously to bat at a hanging toy. Delighted, she smiles and repeats the manoeuvre. His arms hang limply or tense suddenly, his only level of physical response. Occasionally he presses a switch placed immediately under his hand – I’m not sure if it is intentional or pure chance.

She gurgles, and when I gurgle back she smiles and repeats it again. We have a conversation. She cries when she needs something – distinguishable squawks for hunger and cries for other needs. He shrieks in delight. Or is it in pain? He whimpers when he’s too tired to cry.

Tickle her tummy and she grins, revealing big dimples in her cheeks. She’s so rewarding to play with, I just can’t help myself. I have to schedule his exercises in my diary to remember to do them. Often, he falls asleep during therapy.

She shakes her head vigorously, butts me like a hungry calf, then takes a great mouthful of breast: ‘Owp.’ I feed him, drip by drip, through a tube into his stomach.

Carrying her, she holds her head proudly, looking around with wide eyes, taking in the world. Carrying him, his head lolls against my shoulder.

She’s two and a half months. He’s two and a half years. The contrast brought me up short the day she was born. Before her, I had convinced myself that he was progressing, perhaps functioning at the level of a six-month-old. Now I realise, in many ways, he’s less able than a newborn.

She’s always busy. When she’s not feeding or sleeping, she wants to be playing. He’s happy to cuddle, relaxes into my arms, lays his soft, soft cheek against mine and his breathing slows.

wp-1462309270873.jpgShe’s a delight. He’s a treasure. I love them both with a fierce love, the love that just keeps on expanding the more children you have. I wanted this so much – the joyous experience of a ‘normal’ motherhood, that I felt I’d been cheated out of with Benjamin. But I didn’t want to be reminded of what I’d missed. She brings me up short.

Bigger, better, bolder

April 29th 2016 is the fourth annual Undiagnosed Children’s Day, and it promises to be bigger than ever. It’s the third UCD since our own undiagnosed child, Benjamin, was born, and only the second since we found out that Undiagnosed Children’s Day and the initiative for undiagnosed children, SWAN UK, existed. A fitting time to look back over the past year and forward to the next.


Many things have changed since our first UCD, not least Benjamin himself. A year ago, he was a frail baby, his 7¼ kilos dropping off the centile charts altogether. Now, he is a strapping, 13½-kilo toddler (can you call him a toddler if he doesn’t toddle?), creeping over the 50th centile.

For this we can mostly thank one big decision: that Benjy should have a gastrostomy. One year ago we were bottle-feeding him high-calorie milk his every waking moment and he was still not gaining weight, strength or energy. Tube-feeding has made a massive difference to all of us. Benjamin is thriving; he has energy to grow, to learn and to love. We have the time and energy to enjoy life and to enjoy him and our other children.

A bigger boy, and a bigger character: he wears trendy glasses (a simple thing that has made a massive difference to Benjamin’s experience and enjoyment of the world, thanks to one insightful consultant who gave his brain the benefit of the doubt and the chance to show what it could do with clearer images to work with), adores nursery school, loves chocolate buttons and Mr Whippy ice cream, and will flirt with anything female.


Such a charmer!

And it’s not just Benjamin that has grown this past year. Thanks to the supportive and encouraging doctors at the Edinburgh Royal Infirmary, a lot of heart-searching, the thoughts and prayers of many wonderful friends and family (and a small amount of bedtime action), our little family has grown too.


And baby makes three

With all this growth have come bigger challenges too. Benjamin needs not just bigger clothes, but bigger nappies, a bigger bed, bigger equipment of all kinds. Instead of our nippy little Mountain Buggy we now have a sort of pushchair-wheelchair hybrid that might look like a mainstream buggy but weighs like a tank and handles like a shopping trolley. And it won’t be long before we have to enter the world of hoists, lifts, housing adaptations and WAVs.

The circle of professionals involved in Benjamin’s care also grows ever wider as more and more challenges present themselves. This is a common issue for undiagnosed children – instead of dealing with a single specialist in a known condition, we are sent to a new department for every new symptom. Although we are in the fortunate (and rare) position of having good coordination between most of the services and departments involved in Benjamin’s care, it still results in an awful lot of appointments at an awful lot of different places.

Perhaps the most difficult aspect of Benjamin’s care is the never-ending game of catch-up we play as he repeatedly outgrows the dosages of his many drugs. At its most worrying, failure to increase his epilepsy medication in line with his weight resulted in a three-hour tonic-clonic seizure. If his muscle-relaxant isn’t adequate, he can spend days in a state of constant high tone, fighting against his own muscles, drenched in sweat as if he were running a marathon while lying stationary in his bed. We’re always firefighting, waiting for symptoms to occur before we can increase his doses; where pre-emptive increases based on his weight might save him so much pain.

And, as each year passes, the developmental gap between Benjamin and his peers becomes ever wider. The stares and comments become more frequent, and the opportunities he’ll miss out on more apparent. We can no longer carry his buggy over the bridge to our beautiful beach; it won’t be long before he’s too big to lift into the swings at the play park. Already I can see his experiences becoming more restricted by his physical size and ability. Already he’s being overtaken by his seven-week-old sister in motor skills and communication.

Admittedly, no-one can get over this bridge at high tide...

Admittedly, no-one can get over this bridge at high tide…


The year has seen big rewards too: developmental ‘inchstones’ of the kind that mean so much for children without a prognosis. Before this year, Benjamin could only smile at people in his direct line of vision; now he has gained the ability to turn towards someone and flash that smile – a new skill to add to his repertoire of flirting techniques. He’s more interactive both inside and outside the home. He loves to go to nursery – his face lights up when he sees his teacher and realises where he is. And he’s slowly learning (largely from the noise) that he now has a little sister.

And at last we’re getting some formal support: family breaks at our wonderful children’s hospice, and agency carers to help put Benjamin to bed some nights. Informally, we find ourselves part of a growing community of friends near and far, real and virtual, with whom we share the experience of special needs parenting and the challenges of being undiagnosed.


Every day we spend with Benjamin is a bonus and a joy. Every year that passes, we move further beyond our tentative hopes that he might survive birth, a few weeks, his first two years, … No closer to a diagnosis, no nearer to a prognosis, we journey deeper into the unknown. How long will he live? How will he be cared for if he outlives us? Could his condition be passed on to his siblings’ future children?

The next year will no doubt bring more big challenges, big decisions, and big rewards (as well as more chaos and a whole lot more laundry…). We’ll become eligible to apply for the mobility component of Disability Living Allowance which, if awarded, will fund a car through the Motability Scheme and should make our lives a whole lot easier. Benjamin will take up a three-year-old nursery placement, fifteen hours a week, which will be a big opportunity for him and a big wrench for me. It will also mean I have the capability to increase my working hours considerably – something I’ll have to think carefully about to work out what’s best for our family. And who knows what new medical challenges it will throw up and what developmental feats Benjamin will achieve?

Could the next year bring any more mess?

Could the next year bring any more mess?

For undiagnosed children across the UK it promises to be big year: with the UK’s first specialist nurse for undiagnosed conditions starting work, we hope it will be a year for raising awareness and improving care – particularly coordinated care – for children with undiagnosed conditions. Could it be the year we make SWAN UK’s big ambition – that all families who have a child with a syndrome without a name have the support they need when they need it – a reality?


SWAN UK wants to make sure that every family of an undiagnosed child has the support they need, when they need it. SWAN provides the only specialist support available in the UK for families of children and young people with undiagnosed genetic conditions. They support families in hospital and at home offering 24/7 support and information.

You can donate to SWAN UK by texting SWAN11 (amount) to 70070; or online at https://www.justgiving.com/swanuk/

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Sometimes I just don’t know who to call…

To the many professionals involved in my son’s care,

Thank you.

As you know, Benjamin, in common with most other children with rare, genetic or undiagnosed diseases, has a complex array of physical, medical, mental, behavioural and social problems, arising from an unknown underlying cause. These issues are clearly co-occurring and interrelated, but determining how they are related is easier said than done, particularly in a non-verbal child who cannot explain what came first. It’s often a multiple chicken, multiple egg situation.

For instance, this week I sat up with him through the night as his muscles tensed, his respiratory rate quickened, his heart-rate raced, his breathing rattled and his temperature fluctuated. Trying to work out whether this is the result of a new medication he is on, a respiratory infection, the old medications not working well enough to control his muscle tone, some new kind of seizure, … Was he in pain somewhere, causing his muscle tone to increase which in turn affected his breathing? Was he brewing a chest infection? Was the new drug causing his temperature to fluctuate? Should I do some chest physio, give him calpol, or call 999? (In the end, as usual, we never found the answer; but a course of antibiotics, a trip to A&E, a good night’s sleep and a lot of cuddles later he seems to be getting back to himself).

Following this, when I clearly had too much time on my hands (or rather, was too tired to get on with anything useful), I tried to get down on paper most of the manifestations of Benjamin’s condition (so far).


As you also know, alongside each of these symptoms comes a professional, a service, an assessment or a provision. You guys. I’ve added you to my map in green (and some necessary evils in red). And sometimes, with so many of you, I just don’t know which one of you to call.


Benjamin is probably not the most complex undiagnosed child you may deal with, but he is complex enough! And his needs will only grow in extent and complexity as he gets older: continence nurses, school, CAHMS, IEP, DLA mobility component, Motability, adaptations, hoists, lifts, PIP, transition to adult services … or end-of-life care …

We are incredibly fortunate and so very grateful to have so many people and organisations involved in making sure that Benjamin gets what he needs to lead as happy, healthy, long and fulfilling a life as he can. We are definitely the lucky ones. Moreover, we have experienced fantastic coordination of Benjamin’s care. However, that’s something which, sadly, cannot be said for many disabled people and undiagnosed children in particular.

Coordinated care is something that SWAN UK, the support group for families of undiagnosed children, is highlighting this year in the run-up to Undiagnosed Children’s Day on April 29th 2016 (mark it in your diary now!). So, to complement some of the other blogs you may read over the next month highlighting the deficiencies in, and the critical need to improve, coordinated care, I’d like to thank you for the ways in which Benjamin’s care has been coordinated: an example of good (if not best) practice, which perhaps some local authorities could learn from.

  1. We have a small number of overarching professionals (I’ve marked you on my diagram with an umbrella) who have a good understanding of Benjamin’s condition as a whole. If Benjamin has a problem, or if I have a question, I know these people will do their best to find an answer. If they can’t come up with an answer, they also have the confidence to admit it, and the knowledge to refer us to someone more specialist who might. When I don’t know who to call, I call them. I count our community paediatrician and health visitor as our key contacts, and the latter is our named ‘lead professional.’ I’m pretty sure she wouldn’t need that title to provide us with the help that she does but perhaps, for other children, designating the right person as ‘lead professional’ would be a key step to providing more coordinated care.
  2. You all talk to one another. Shock, horror! I don’t mean everyone, all the time: the school bus driver is not in regular discussion with our optometrist; but there is at least some degree of linkage between most of the people in our tangled web of support. Our more regular contacts do their best to attend Benjamin’s Multidisciplinary (medical) and Staged Assessment (educational) meetings, and if they can’t, they send a report or follow-up with me separately. I’ve heard other parents say that they were the only ones to turn up to a staged assessment meeting that should have included at least half-a-dozen professionals. I know these are busy people, but surely they could have sent in an apology to some central organiser, so that someone could twig that attendance would be low and reschedule the meeting for a time more convenient time for everyone?
  3. You are contactable and you actually call us back. I do sometimes bemoan the fact that NHS staff never give out email addresses, when it would be so useful and so much easier than trying to phone to reschedule an appointment with a baby screaming, a 13 kg toddler with no head control on my hip, and a pre-schooler decorating the sofa with felt-tipped pen. And yes, we do sometimes receive an appointment letter 48 hours after the appointment was supposed to take place. But generally, your communication is great. I know if I need to speak to someone, I can. Whether it’s to ask the neurologist to tweak Benjamin’s medication, discuss his feed requirements with the dietician, or talk to his nursery teachers about how he got on in class today, I reliably get put straight through or hear back within 24 hours. Many of our community team – the nurses, respiratory physios and the like – will come out to our house, 30 miles from their base, the same day.
  4. Finally, and at the heart of coordination, Benjamin’s care is patient-centred. Most of the people we see know Benjamin well and treat him as a whole. You don’t limit yourselves to the isolated presenting symptom that lies within your specialty. Our physio wants to know how his sleep has been, our neurologist makes sure he is up-to-date with any feeding issues, our educational psychologist wants to know what the visiting teachers are doing at home as well as what he is being taught at nursery… With a complex child like Benjamin, this sort of approach is crucial, because more often than not the issue under scrutiny is a manifestation, a sign, a cause or an effect of a problem in a completely different part of Benjamin’s makeup.


I don’t know why the system has worked well for us. Perhaps we are lucky to live in a small local authority, with a small number of special needs children, which facilitates a more personal relationship with professionals than elsewhere. I know many families are not so lucky. Time and resources are limited; departments and individuals are stretched. Poor administration, management and support can lead to frequent miscommunication. All this needs to change.

As parents and carers we also need to take responsibility for encouraging more coordinated care for our children. We need to ask the right questions, prompt a broader discussion, speak up and not accept the first answer we are given. As a trivial example, early in our journey, one of Benjamin’s challenges was a strong tendency to turn his head to the right at all times. Our physio recommended positioning him so that points of interest (a window, a light, a face) were always on his left, to encourage him to turn that way. A week later, our ophthalmologist proposed always providing visual stimulation to Benjamin’s right, where he could see it easily, thereby providing maximum opportunity to encourage his vision, and his brain, to develop. I never thought to mention to each professional what the other had said, to suggest dialogue between the two or seek a compromise that would be best for Benjamin. I just worried that whichever way I positioned him it would be detrimental to one aspect or another of his development. In the end I decided that, on good days when he was less strongly fixed to the right I would encourage him to turn to the left; on bad days when there was no chance of him moving to the left for anything, I would provide things to look at on the right. At a later date I mentioned my strategy to you both, and you both agreed! Nowadays, Benjamin’s head is usually pretty much central and his vision is vastly improved (unless I’ve forgotten to get his fringe cut…).


For the 6,000 children born each year with an undiagnosed syndrome, without knowing the underlying cause(s) of their symptoms, with only a sketch-map of the linkages between their problems, with no long-term prognosis and myriad agencies involved, coordinating care is difficult, yes, but oh-so-very important. Thank you for seeing that. Sometimes I just don’t know who to call… but thanks to you I know there’s always someone.


Benjamin’s mum

SWAN UK wants to make sure that every family of an undiagnosed child has the support they need, when they need it. Undiagnosed conditions have been shown to have a lower rate of care coordination than diagnosed conditions. We want every child and young person with a syndrome without a name to receive high quality coordinated care and support both in hospital and at home.

You can donate to SWAN UK by texting SWAN11 (amount) to 70070; or online at https://www.justgiving.com/swanuk/

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To tube or not to tube

‘Failure to thrive,’ it used to be called. Nowadays it’s ‘faltering weight.’ Both terms to strike fear into a mother; neither does justice to our daily battle to keep Benjamin’s weight within the realms of ‘normal,’ our weekly visit to the centile graph, the results of which are dutifully emailed to the dietician in case this is the week she decides so much slippage is too much.


From day one we knew it would be an uphill struggle. They predicted he wouldn’t breastfeed, but with his first tantalizing nibble in the delivery room, I knew he wanted to try. That first week was spent repeatedly weighing him to calculate exactly how many calories he needed to imbibe each day, then forcing that quantity of milk into him through every combination of breastfeeding, formula-feeding, expressed milk-feeding, syringe-feeding, finger-feeding. Every three hours we fended off the well-meaning paediatrician with her naso-gastric tube. Every three hours we re-calculated, expressed enough milk for the next session, and tried to snatch enough sleep to continue. Without the practical support of the nursery nurses and the encouragement of the midwives we would never have jumped that first hurdle.

After five days we were home, terrified, and clinging to that regime. It took weeks – and the support of the community midwives and breastfeeding counsellors – before I was able to believe that Benjamin really could feed ‘on demand.’ That he and I could work as a team; that we each knew when he was hungry and that his weight would continue to creep up.

The months passed. He got hungrier, cluster-feeding for a full six hours each evening, then waking during the night for more, and still the graph teetered around the danger-line. We added 200 mls of high-calorie formula each day, then 400 mls, then 600 if he would take it. We added purees, three times daily, then snacks on top of that. The graph inched up, tracking along the 0.4th centile (putting him in the lightest four out of every thousand boys of his age).

At a recent ‘Multidisciplinary Meeting’ with the community paediatrician, she looked at the neat line of weekly dots tracking the 0.4th centile and was satisfied. What she doesn’t see is the sheer effort that Benjamin, I, the whole family, put in, day after day, to keeping that line from faltering. The breast-feeding, the bottle-feeding, the oh-so-slow puree-feeding. The pureeing, the cleaning bottles, the cleaning up milk that doesn’t stay down. Some days he is so hungry I can’t produce enough breast milk. Most days I am constantly offering it when he is not interested. Every evening one of us is glued to the sofa as Benjamin glugs through his bottles. We have a freezer full of breast milk, expressed both to keep up my supply for the hungry days, and as insurance against any future hospital stay.

So we talked again, as we have at every meeting since before he was born, about tube-feeding. An NG tube through his nose or PEG into his stomach. The paediatrician seemed to imply it is as much a lifestyle choice as a medical one: if feeding him becomes too much, this is our get-out. But what mother is ever going to say to the doctors, “I’m sorry, feeding my baby is too much effort”?

Now, his graph is dropping again, away from that 0.4th centile line, the lowest on the paper. He’s lost 300g in a month – the equivalent of nine Cadbury’s Creme Eggs. Every day I wait for the dietician to call and say, “This can’t go on.” Every day I present him with my breasts, my purees, and those stinking bottles of formula. Often, more dribble comes out than food goes in.

As a recovered anorexic I have been so aware, so careful with Jackie, never to treat food as a punishment or reward; never to say, “you can’t have pudding until you’ve cleared your plate,” in the hope that she’ll retain those inbuilt cues to her hunger and satiety that I have mistreated until they are gone. Even with Benjamin, so far, I may present him with food but if he’s not hungry, there’s nothing you can do to make him eat and I am proud of him for that. The thought of putting a tube in and just pumping him full of tasteless fluids sickens me.

And he takes pleasure in his food. Real, sensory pleasure. He opens his mouth for foods he likes and clamps it shut for those he doesn’t. He clearly distinguishes different flavours and textures. I would hate to deprive him of this by bypassing his mouth altogether.

This isn’t something we have to decide straight away, but it’s something we do have to start thinking about, considering risks versus benefits, understanding what each option entails. I hope, at least, to delay the decision until he is big enough for a PEG, to spare him the discomfort and indignity of an NG tube. It’s not an all-or-nothing solution: potentially we could use a tube just for top-ups on the days he’s struggling to eat enough orally. And, as usual, just when we think we can’t go on, Benjamin pulls something out of the bag. This week he gained back 100g in weight, so maybe we can put it off for a little while longer. We will keep battling on.


As my friends on Facebook will know, we reached a major milestone this week. And as other special needs parents will appreciate, what is a milestone for us is something that many neurotypical children do so automatically that it’s barely worth noticing. He started playing. At least, that’s what I’m going to call it. He made repeated (if small, slow) movements with his hands to (successfully!) move an item (one of those silver space blankets) in a way that interested him. Now that’s progress!

And progress not just for him but for all of us. It’s not easy to play with someone who doesn’t respond, who isn’t able to tell you what he likes and what he doesn’t, what he wants to rattle and what he wants to look at. It’s so easy to get disheartened, to plonk him in a corner with something shiny, not thinking he’ll even look at it let alone engage with it, and carry on with making the dinner. So I’m really hoping we’ve hit a kind of positive feedback loop here: I give him a toy, he plays with it, I play with him more. Result! We’re a long way from a game of chess but, at our own pace, we’re getting there.