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…

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‘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!

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‘Morning everyone!’

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‘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?).

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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.

 

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Therapy for two

To be honest, I’m terrible at making time to do therapy with Benjamin. A quick stretch while I’m changing his nappy. A couple of rolls when we’re getting dressed in the morning. Plonk him in his chair facing in a slightly different direction each day, give him some toys to look at and that’s about it.

To be honest, by the time I’ve done all the treatments that keep him alive – the inhalers and the nebulisers and the chest physio and n-p suctioning; by the time I’ve given him his medication six times a day and made up his feeds and checked his stoma and washed and dried all the syringes; by the time I’ve done the day-to-day essentials – washed him and dressed him, brushed his hair, changed his nappies, set up his sleep system, carried him from room to room, there doesn’t seem to be much time left for ‘therapies:’ the things that won’t keep him alive but will help him develop. The things that will stretch him, mentally and physically. They drop to the bottom of the list, somewhere between making sure everyone gets fed and catching up on the endless piles of paperwork that come with having a child with complex needs.

To be honest, putting him into shoes or splints or getting him onto a gym ball is quite hard work – he’s not getting any lighter or any more flexible. Getting him into his standing frame is really hard work. Sometimes even keeping him awake or finding a toy that grabs his attention is really, really hard. I’m scared of hurting his stoma, fearful of pulling out his feeding tube. I’m worried I might drop him!

And I don’t want to push him – we’ve spent too much time in and out of hospital to want to push him. Too much time wondering if his seizures could be caused by overstimulation. Too much time fearing that rolling around on the floor during physio would make his reflux worse and therefore make his chest worse. Two days a week he goes to nursery, which is brilliant but exhausting for him: there’s no way he’d manage any exercises on top of that. There’s usually at least one other day in the week he’ll have some kind of therapy anyway – a physio visit, or a session with the visiting teacher, and after 45 minutes’ intense interaction with them he’s shattered. Maybe he’ll be a bit off colour one day; another day he’ll have had a bad night and just need to sleep. And then it’s the weekend – surely he deserves a break on the weekend? Or is that just me?

Because Benjamin is classed as ‘life-limited,’ I justify it by the reasoning Saira Shah, author of the Mouseproof Kitchen, calls upon when speaking about her daughter, Ailsa, before she passed away at the age of eight. “What’s the point of giving her therapy which would give her 20 per cent more muscle tone when she’s 50? This is what she loves … being held, being rocked, being dangled upside down. I don’t see why she can’t have a life where she is just cuddled.” But for us this has degenerated into a life where he just sits and watches me work.

Our physiotherapist is wonderfully understanding. ‘Don’t see it as a therapy programme,’ she says, ‘you have enough on your plate. Just do it when you’re sitting with him anyway.’ But when am I ever ‘just sitting’ with him? When do I ever sit, alone or with my children? When do I stop rushing around and connect with any of them?

And then, then there are the girls. They are both part of the problem and part of the solution. It is so hard to find time to focus upon Benjamin, who just sits there passively, dozing, when there are two caterwauling bundles of energy, one stout and curly, one lithe and blonde, pulling you in opposite directions with opposite vociferous demands.

But, no thanks to my lax approach (and partly thanks to our sessions at the Bobath Centre), he’s getting good. He really is. He can look to both sides now – and hold it. He can sit straight and tall with only a minimum of support at his lower back. He can bring his head up with you from lying. He can hold his head up when you lean him sideways. I hadn’t really noticed until I was watching his physiotherapist working with him one day. It’s much easier to see when you’re watching from a distance. And suddenly I thought, hang on, I want some of that.

It was like a switch flipped in my head. Doing Benjy’s therapy isn’t a chore, to be got through as quickly as possible, to be ticked off the list. Benjy’s therapy isn’t in conflict with enjoying him – it’s time to enjoy him, to let him show me what he can do. It’s precious time to spend with him, revelling in his achievements, building a better connection. Just as I spend time with Jackie reading stories before bed, or building Lego. Just as I spend time breastfeeding Caitlin and pushing her on the swings.

I guess I’m starting to appreciate this a bit more now he’s getting older and I’m not necessarily with him 24/7. With his carers, nursery, respite, and time at Rachel House (not to mention time in hospital), we’re slowly dividing his care up between more and more people, which means less and less Benjy-time for me. I need to start claiming some of that time back in ways we will both enjoy and benefit from.

And could it even help me to slow down a bit? Instead of rushing around the house could taking half an hour to ‘just sit’ with Benjy also be a half hour for me to breathe, relax and regroup?

And could it actually be of benefit to his sisters too? Instead of leaving them in front of some uncensored crap on YouTubeCbeebies could we at least and watch Cbeebies together, in the same room, and talk about what we’re watching, while Benjy’s practising his moves? I could learn a lot from Benjy’s little sister, bouncing up and down on her tiptoes in front of his chair going ‘Jenjy – uh – uh – uh – Jenjy’ and demanding to have him lowered down to her height to play. Because that’s all his therapy is, really, play. It’s not arduous, it’s not unpleasant. It’s a bit of stretching out, a bit of rolling on a gym ball, a bit of singing nursery rhymes and doing the actions, a bit of looking at things he likes to look at. What am I making such a meal about? Why am I putting it off? Therapy isn’t in conflict with the cuddles, it’s a way to cuddle him more. We could all do with a few more cuddles in our lives – and Benjy-cuddles are the very best.

It was the best of times, it was the worst of times

(Charles Dickens; A Tale of Two Cities)

The experiences of our little household pale into insignificance against the backdrop of political turmoil, cultural change, and sad losses amongst our beloved SWAN community, that characterised so much of 2016. Nonetheless, we had our own ups and downs…

Our year started on a knife edge as we awaited the final scan of our unborn baby three weeks before its due date. A year on, I simply cannot imagine life without the chubby little bundle of laughter, energy and character that is our Caitlin. Her middle name, Faith, reflects the gamble we took and the faith we had that it would work out, but I had absolutely no idea just how well it would work out; what an incredible difference she would make to our family, how happy she would make us and how she would complete us.

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Do not be fooled by the angelic appearance

Aside from Caitlin’s birth, I recall little from the first few months of the year. They have become overshadowed in my memory by the period from May onwards, during which Benjamin has been repeatedly, seriously, ill. Over that time it has been rare to have more than two weeks at home between hospitalisations, operations, intubations; week after week in high dependency and many, many doctors scratching their heads. During this time family life has inevitably suffered. We’ve been living long-term on a short-term emergency footing, planning day to day, shifting the girls from pillar to post, every one of us missing the others, staggering from one admission to the next with barely time to breathe. The doctors now say this will likely continue for years.

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But while Benjy’s physical health may remain precarious, the impact on our family doesn’t have to continue. Positives have emerged from the situation. For a start, we’ve really discovered who our friends are, just how numerous and how generous they are. We’ve fallen firmly on our feet in the community we chose to live in and we have felt included and loved within it this year.

Our two girls have proven to be a huge support, to ourselves and to each other, during the interminable hospital stays. Tolerant, patient and flexible, although often separated during the day their relationship has come into its own whenever they are together. This year would have been so tough on either of them had they been alone. Together, they have borne it far better than I, and forged the foundations of a strong, loving relationship (and comedy partnership) that I hope will last long into adulthood.

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Plotting something

For myself, the initial despair that we might be facing more years like 2016 pushed me to accept that we should ask for more formal help; that we should make a plan. With much help and encouragement from my social worker aunt, from the charity Kindred, from social services, Rachel House Children’s Hospice, and others, I have built a package of practical, medical, emotional and financial support that gives me hope that we enter 2017 more resilient, able to move on from our emergency footing to live life despite, during and through Benjamin’s hospital admissions.

We are now better placed to support Benjamin as much as we can from home: with prophylactic antibiotics, a nebuliser, suction machine, ‘sats’ monitor, weekly specialist physio visits and emergency feeding regime. The down side, of course, is that our home is more like a hospital and my role more of a nurse, but that’s a small price to pay for less time actually spent in hospital and torn between my children.

With support from social services, Caitlin will be able to attend nursery even though I am unable to go back to work to pay for it (and I’m more than fortunate that my employers continue to be incredibly flexible and understanding about this). It’s a little earlier than I would have liked her to start, but will give her a consistent place to go when I’m in the hospital with Benjamin and – even better – the same consistent place as Jackie. Being the outgoing little soul that she is, and being so used to being cared for by strangers, she settled in without a backward glance at Mummy. Like Jackie, she’s already having to grow up too quickly; it’s bittersweet but I am so proud of her.

Proud of me? But I'm stuck under a table...

Proud of me? But I’m stuck under a table…

And, when he’s well enough, I’ve also thrashed out a plan with Benjamin’s teachers and headteachers, council safety and transport officers, and his incredibly competent and lovely school nurse, to enable him to attend nursery too! It’s going to take some dedication from us all, but eventually he should be able to transition to the two full days he’s entitled to at his age. The way his eyes light up when he enters his classroom shows that this is absolutely the right thing to do, and the work we will put in to get him there is nothing compared to how hard he works to hold his head up, to move his eyes, to switch his switches, when he is there. Benjamin is the inspiration that keeps us all moving forward.

Other things have fallen into place to make life seem easier as we move into 2017. We have a car. We even have a parking space for it! Benjamin has qualified for monthly respite breaks from NHS Lothian Children’s Services. He’ll receive his vaccination boosters again and he’ll be tested and retested as doctors continue to seek answers to his problems. He’s been accepted for therapy at the renowned Bobath Cerebral Palsy Centre in Glasgow. 2017 will be nothing if not busy!

We know not all of this will go to plan. Benjamin will, without doubt, spend extended periods in hospital. Plans will be put back, put on hold. Some days it will take all my efforts to keep him well enough to stay home. Some days I’ll be successful: already over the past few weeks he’s had infections that I’m sure would previously have seen him in hospital, and the feeling of achievement when he comes through one is almost enough to make up for the lack of sleep! Some days I’ll get things wrong. Some days he’ll just be too sick, and I have to responsible enough to make that call. But being in hospital is no longer the spectre it may seem from outside. Being ventilated is not to be feared, it’s just the level of support he needs at that particular time. All the time we are learning, our normal is changing, and through all that we can cope and we can thrive.

Thus our big lesson to take into this New Year is to manage our expectations for it. To hope for the best and prepare for the worst but never to fear it. I don’t mean this to sound negative: if we can prepare for the times of sickness we’ll be ready to take full advantage of when Benjy’s well. So while I know I’m not going to get a foreign holiday – or even get to London – for a couple of years, if Benjamin is fit and the weather is fine we can damn well pack the tent into our big new car and have just as much of a break a few miles down the road. We may not be able to commit to a dog, but our new guinea pigs will be showered with love and (maybe rather too rough) affection.

Just before Christmas I received a phone call from our new paediatrician, not with an appointment, a cancellation or a result, but just to check how we were doing and to tell us that everyone in the Sick Kids was thinking of Benjamin and wishing him well. I can truly believe that, because Benjamin brings out the best in people. In what could have been, if not the worst of times certainly a difficult year for us, our children, friends and family, the professionals that work with us and all those who helped us, have made it one of the best. With the festivities falling nearly three weeks after his last release from hospital I knew we were on borrowed time, but spending Christmas morning opening stockings in bed with all three of my children is something I will always treasure, and a memory that will carry me through whatever the next year may bring. With much love to all our readers for 2017.

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Being Benjamin’s mum

I don’t know why I still subscribe to them. Those weekly emails from the parenting websites listing the milestones my children ‘should’ be reaching at three weeks, three months, three years. It’s weaning time! … How to get your toddler to sleep … Starting school … and, this week, 50 reasons why it’s fun to be a [mainstream] parent.

I know they mean well. If you’re struggling with sleepless nights or a tantruming toddler it’s good to be reminded of the positives, right? But what if none of those things that make mainstream parenting fun apply? What if ‘discovering how lovely the dawn chorus can be’ just doesn’t cut it? What if you’re never going to hear him ‘say I love you Mummy’? Is parenting a SEND child no fun?

Yes, it can be exhausting, challenging, nervewracking, heartbreaking. But I firmly believe that deeper troughs make for higher peaks. SEND parents not only learn to celebrate the tiniest inchstones for all they are worth, but to see the funny side of things that frankly aren’t funny at all! I’m sure these will be different for every SEND family but, on Benjamin’s third birthday, I’ve put together my own list of reasons it’s fun, wonderful and inspiring to be his mum.

  1. He gives the best smiles
  2. He gives the best hugs
  3. Running my fingers through his curls
  4. Looking into his big brown eyes
  5. Tickling the baby-soft soles of his feet
  6. Savouring the simple things with him – the light coming in the window, leaves against a blue sky
  7. Seeing the love his siblings have for him – and how he reciprocates it
  8. Seeing how gentle, loving and patient his Daddy is with him
  9. Seeing his heart rate go on up the sats monitor when he hears Mummy or Daddy’s voice
  10. His smile when you give him a taste of ice cream
  11. His look of disgust when you give him pureed chicken!
  12. Learning a whole new set of skills (nursing, negotiating, engineering, accounting, …). If only I could put them on my CV…
  13. The sense of satisfaction when you hoover a big plug of phlegm out of his throat
  14. The way he looks around in delight when you put his glasses on
  15. How cute he looks in his glasses
  16. An excuse to hang a disco ball in your lounge and have fairy lights up all year
  17. An excuse to play with bubbles every day
  18. Getting to watch Waybuloo on repeat
  19. Shopping – who knew how many gorgeous bibs and onesies there are out there nowadays?
  20. Choosing cute teeny tiny glasses
  21. Choosing snuggly jumpers and snugglier socks
  22. Rediscovering the joy of Christmas – baubles and fairy lights really are all you need
  23. Seeing how he relaxes in the bath
  24. The sense of satisfaction when you manage to capture that smile on camera
  25. Learning his unique language
  26. Seeing him turn his head to look at me when I speak
  27. Seeing him smile when I walk into a room
  28. The special kisses that he saves just for mummy
  29. The special nappies that he saves just for Daddy!
  30. Morning snuggles with five in the bed (we really need a bigger bed)
  31. That feeling that you could watch him sleep forever
  32. Making amazing new friends with amazing wee heroes for children
  33. Meeting a community of other SWAN parents who just get it
  34. Everybody in the town wanting to stop and hear how he is
  35. People passing in the street saying ‘You’ve got your hands full!’ and thinking ‘Yeah, and I wouldn’t have it any other way.’

All this in just three years; I can’t wait to see what you bring us in the future. Happy Birthday my gorgeous boy, I am truly grateful to be your mum.

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What Zika virus means to me

“Zika virus could be bigger global health threat than Ebola” … “WHO holds emergency meeting” … “Global health emergency” … “Obama has a new plan to fight Zika,” scream the headlines. There’s something fascinating about an emerging tropical disease isn’t there? No matter how much sympathy we feel for people caught up in the Ebola crisis, for instance, we can’t help gorging – from the comfort of our western homes and hospitals – on the gory details of whole African villages haemorrhaging to death. And Zika virus is somehow more fascinating, more ‘can’t turn away’-terrifying because its effects are insidious. The symptoms are mild; most people don’t even realise they’ve got it. Unless, that is, they are a pregnant woman. And then it does grotesque, terrifying things to the unborn foetus that may not become apparent until birth. Microcephaly. It’s a ready-made horror story.

Except it isn’t. Microcephaly is neither a new phenomenon nor a horror story. It is something close to the hearts of many families throughout the world. Estimates suggest that (pre-Zika) it affects at least two in every 10,000 live births. That puts it in the category of ‘rare diseases’ but by no means the rarest. And now these families, families like ours, find ourselves thrust into the limelight, and not in a particularly good way, with media comments such as “microcephaly is a lifetime disaster” becoming the norm.

Microcephaly literally means ‘small head’ and is caused by a small brain – whether due to a genetic disorder, trauma, or infection. It can be an isolated symptom in an otherwise ‘normal’ individual, or one of many manifestations of a complex, known or unknown, condition. Consequently, the effects of microcephaly can range from mild to severe and may include physical disabilities, learning disabilities, developmental delay and epilepsy. For my son Benjamin, whose microcephaly is towards the severe end of the range, it means he is non-mobile, non-verbal, incontinent, epileptic, developmentally delayed (at two years he is functioning roughly at the level of a two-month-old), fed through a tube into his stomach, and on a daily cocktail of medications. He is also the most contented, smiliest little boy – and a complete flirt with the ladies to boot.

The face of microcephaly to me

The face of microcephaly to me

I have read several great commentaries by parents of children with microcephaly (for example this one from The Heartful Mom, or this interview in The Washington Post) arguing forcefully against the bad press applied to those with the condition. I couldn’t improve upon these, so instead offer up a few thoughts that the Zika crisis has thrown up.

From a personal perspective, as the parent of a child with an undiagnosed condition, I am constantly on the alert for possible explanations. My initial thought – however illogical – on hearing of the proposed link between Zika and microcephaly was could Benjamin’s microcephaly have been caused by Zika virus? Although I did used to travel the world – for work and pleasure – and generally had a pretty laissez-faire attitude to health precautions, that has all been curtailed by the arrival of children. The last time I was in the Americas was 2009 (an amazing trip to Guatemala where, among other things, my husband proposed to me on an active volcano). This was four years before Benjamin was born, and at least five years before the disease became prevalent, so I am clutching at some pretty invisible straws here! There remains the possibility that I could have contracted some other virus during pregnancy, but tests for all the likely contenders (toxoplasmosis, rubella, cytomegalovirus, herpes simplex, HIV, syphilis and measles) have come back negative. I also found myself increasingly drawn to the conspiracy theories suggesting that the microcephaly ‘outbreak’ does not result from Zika virus at all, but from the mass inoculation of pregnant woman against whooping cough using the DtAP vaccine, which was initiated in Brazil at around the same time as the virus emerged. Being both pregnant and paranoid, I already had small concerns in my mind, because having the DtAP vaccine was the only thing I did during pregnancy with Benjamin that I did not do with Jackie. Could this have been the cause of his condition? In the end, I have tried to override my paranoia and had the jab in my current pregnancy too, but I did leave it until a much later stage.

But these are really academic, irrelevant questions. Looking outward there are much bigger concerns. For most of us, this is just another of the many issues facing families in other parts of the world – maybe even a relatively minor one in the face of war, famine, or natural disaster. Having no experience of any of these things, it’s easy to put them to the back of our minds and carry on with our day to day lives, maybe popping some loose change in a collecting tin when it’s rattled under our noses. Microcephaly, however, stares me in the face every day. We manage Benjamin’s condition, keep him healthy, happy, growing and developing, because we receive a huge amount of input from health professionals, therapists, educators, social workers, our wonderful hospice, etc., etc., etc. How are mothers in the Zika-affected countries going to cope without such comprehensive help? How are already stretched or non-existent health services going to treat thousands of children – children like my Benjamin – with microcephaly? Are pregnant women in Zika zones going to be encouraged to abort their babies just in case? How can we help? Both UNICEF and Save The Children are accepting donations for programs of education, research, providing mosquito nets and removing mosquito-breeding grounds – aimed at prevention of further cases, but I have yet to find an organisation actively supporting the children and families already affected by the outbreak. Microcephaly need not be a ‘lifetime disaster,’ if we can find a way to help.

Gambling

Image © Ralf Roletschek [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

Image © Ralf Roletschek [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

I haven’t blogged for several weeks. I couldn’t. My mind and body have been consumed with something that I – and my family – weren’t yet ready to share.

We have decided to try for another baby. Some might say this was a brave decision. I’m sure others would call it reckless, selfish, … crazy. It surprised me, actually. I thought we would continue to skirt around the issue until it was too late. Or, I thought we would play it safe. I thought one of us, at least, was naturally risk averse, and the other wouldn’t push them. Turns out, on matters of life and death, we are both gamblers.

We agreed that the benefits a ‘normal’ third child would bring to our family, and particularly our existing children, were so great as to make it worth the risk, the one-in-four risk, that that child will not be ‘normal.’ We did our research: we know that with no genetic diagnosis there will be no early way to test. We know that in all likelihood it will be 32 weeks before any abnormalities can be detected. We know that it might be 38 weeks before we can be even fairly certain if the baby does not have the same condition as Benjamin.

And now here I am, carrying that baby, for as long as it takes and hopefully longer.

It can be lonely, being pregnant. Those first twelve weeks when it’s just your little secret aren’t so much fun the third time around. You’re too tired to go out for coffee (you shouldn’t be drinking coffee anyway) and you’re in bed by 9pm, so the majority of your conversations are limited to a non-verbal baby and a three-year old who doesn’t understand why you’ve always got your head down toilet.

And if the whole pregnancy is to be overshadowed by fear, fear of that looming one-in-four chance, what then? You don’t like to talk to your family, to get their hopes up over a baby that may never be. You hide away from your friends – the fewer people see your growing bump, the fewer people you will have to explain to if that bump disappears before its time. You feel guilty among the wonderful online community of other mums of undiagnosed children, because you know many of them have faced the same fears and made the equally brave decision not to have another child; the last thing you want to do is reopen their old wounds.

I am blessed to have a fantastic, caring husband with whom I can share everything and be totally honest, and who is with me one hundred percent in this gamble. I am grateful to have a supportive obstetrician. I know that she knew that we would take the risk: her parting words at our pre-conception meeting were, “I’ll see you back here when you are pregnant.” I am also fortunate to have been able to talk to the rector of my local church. It is a great comfort to know his thoughts and prayers are with me. And now, I am pleased to be sharing our hopeful (I dare not say joyous) news with you. I would love to have your thoughts and prayers too.

Highs and lows of a feeding tube

It’s been a few weeks now since Benjamin got his mic-key button fitted. The operation went smoothly and we were home in a couple of days. Beforehand, I asked “will this give me my happy little boy back?” With all the research on earth we weren’t going to know the answer to that question without trying it. Here’s what we’ve found out so far.

On the plus side…

  1. Benjamin is thriving, piling on the pounds, filling out, and growing out of his clothes.
  2. We don’t have to spend all day just trying (and failing) to squeeze enough calories into him orally.
  3. We’re all getting (a little bit) more sleep. There are still plenty of other reasons for Benjamin (or Jackie) to get us up in the night, or to keep us up late, but at least hunger isn’t one of them.
  4. The button hasn’t (touch wood, cross fingers, do a dance to the patron saint of gastrostomies) come out, so Benjamin hasn’t had an A&E admission since.
  5. It’s easier to get him to take his medications.
  6. I feel slightly less of a fraud for claiming carers’ allowance and DLA, now that he has something obviously “medical” for me to deal with.

On the minus side…

  1. I can no longer bring him into our bed to comfort him. At least, it takes a lot more effort to switch off and disconnect everything, and later reconnect it all; not ideal when you and he are both knackered and you just want to scoop him up and take him straight under the duvet.
  2. Overnight feeds mean over-full nappies, so more often than not I have an uncomfortable boy and a heap of bedlinen to wash in the morning.
  3. It’s a tiny bit more hassle feeding on-the-go. And we get more funny looks.
  4. We have a lot more stuff to travel with. Gone are the days when it was just me and my breasts. Now we have pumps, night milk, day milk, giving sets, extension set, syringes, more syringes, spare buttons, stuff to wash it all with, and gallons of cooled boiled water, on top of all his medications and the usual nappies and stuff. Holidays by train are looking increasingly like a thing of the distant past. But it could be worse: we don’t, like a lot of people, have to carry oxygen cylinders and sats monitors and suction-whatevers. Yes, it could be a lot worse.
  5. It looks like it’s for good. Basically, his tummy is full all the time. If we’re going to keep giving him half his calories overnight through a tube, I fear he’ll never be hungry enough to learn to eat properly in the day. So is this it? Will he be tube-fed for the rest of his life?

So, on the whole, a big success. Refer to plus-point 1: Benjamin is thriving (his other health problems notwithstanding). We are, slowly, getting more smiles. It would take an awful lot more negatives to outweigh that. And therefore to minus-point 5: Will he be tube-fed for the rest of his life? Who cares?