In the UK, 36% of the population are currently signed up to the organ donor register. There are around 6,500 people waiting for a transplant. There are about 5,000 people who die each year in circumstances where they could donate their organs. And approximately three people die each day waiting for a transplant.
These are the stats. And let’s be honest – they suck. We need to change them.
Organ donation really is a miracle; it’s a simple fact that Hugo would not be here today without it. But as the stats above allude to, there is a real shortage of organs. Too many people are waiting for too long for their gift, because too many people are saying no. Many people believe that all you need to do to donate your organs is to be on the organ donor register, but this is not the case. It’s a great starting point, of course, but it won’t guarantee your wishes will be fulfilled. If you die in circumstances where you could donate organs, your family also needs to give their consent. And sadly, less than half of the families approached about donating their loved one’s organs agree to donate if they don’t know that was their relative’s wish.
As you’d expect, given our journey, that question would be a no-brainer for us. But for many families in that situation it can actually be a real burden; having to make a big decision at such a difficult time cannot be easy. We mustn’t pass judgement on the families that say no; we don’t know them or their situations, their reasons. But we can try to make their decisions easier, by talking about it. By having the conversation with our loved ones. It really is a matter of life and death for so many people – it may sound like a meaningless platitude, something that’s “easy to say” (it’s really, really not, by the way), but it’s the real, harsh reality of it.
Unfortunately I know this because last year, my extended family lost two very young baby girls within just a few days of each other. Daisy, part of my liver family, needed a liver. Marnie, whose mummy is one of my oldest childhood friends, needed a heart. Two families lost their darling girls – daughters, sisters, nieces – because their new organ simply didn’t come in time. These beautiful girls were just months old. They should still be here. It still breaks my heart to see their parents and families having to carry on without them. In spite of their heartache, both families have done wonders in keeping Marnie and Daisy’s legacies going, campaigning for awareness and a change in the currently opting-in system (something I’ve talked about before), and not letting their babies’ lives be in vain. Marnie’s parents were even able to donate some of her heart valves after she died; they managed to give hope to other families when their own had been shattered. Their strength is simply inspiring, and their girls will never be forgotten.
Marnie Brace, 10/5/16 – 26/10/16
Daisy Williamson, 14/7/16 – 24/10/16
While we will never, ever forget these beautiful girls, it’s important to spread a message of hope this week for them. To use their legacies to focus us on what we can do, what we can change – and what a positive story organ donation can be, too. Just as Marnie and Daisy’s wonderful parents are doing, many of my liver family are also campaigning and spreading awareness this week. These children are the lucky ones whose organs came in time, even though some of them had agonisingly long waits – Conor waited over two years. These families have been kept together through the strength, bravery and kindness of their donor heroes; mostly strangers but some living donors (like Hugo’s superhero daddy). They’ve been able to reach milestones that they, at one stage, couldn’t believe would happen – first birthdays, first days at nursery or school, passing driving tests. I’m blown away whenever I see how well these kids are doing, especially those we knew closely at King’s – to see them looking so amazing now just puts the biggest smile on my face, and I’m so proud and privileged to know each and every one of these families. Most of these kids are here and living their lives on behalf of their angel donor, and all of them carry a truly special message – that organ donation works, and is so, so worthwhile.
We count ourselves lucky every single day that Hugo got his liver in time and that he is still doing very, very well (of course, touching wood). His clinic appointment at King’s back in July was perfect; the email from his doctor the following week simply said “bloods all good – see you in six months”. It still makes my head spin, really – I don’t think that feeling will ever leave me. At eight months old the chances of him reaching his first birthday were getting narrower by the day (after transplant, we were told he probably only had a couple of weeks left), and now he’s speeding towards his third birthday. His life will never be a straightforward one – he’ll always be under treatment for the transplant with regular bloods (the next set is today, gulp) and daily medication. But he is clever, cheeky and funny, strong-willed, independent and full of wonder. And above all, he is here. He has so much fight in him, and is so full of life and love (mostly for Thomas, obvs), and that is all thanks to the miracle of organ donation. It could have been so different, and I’ll never stop being grateful that it wasn’t that way for Hugo.
That’s what this week is about. Please, help us make a difference. Don’t let the world lose another Daisy or Marnie. Sign up to be an organ donor. Shout LOUD about it. Make it known to anyone that will listen – share the shit out of it on whatever social media you have. Have the conversation that could give one more person the chance to live, that could keep one more family together.
Let’s change the stats.
Watch this video from the 2017 Organ Donation Week campaign here:
I’ve never been great at New Year’s resolutions. I know how useless I am at sticking to them, so I generally don’t bother. Last year, however, I decided that I would make some resolutions. They were mostly little things – the standard pledge to keep in shape (miserably failed here), remembering to take my make-up off every night before bed (awful habit I know, but now I mostly remember) – but one was to start writing more regularly again.
Well, that didn’t go very well, did it?
The truth is that all the while Hugo is doing so well, I feel a bit conflicted about keeping the blog going. It is tied so intrinsically to the torment of his first year that it almost feels farcical to keep it going. Some people agree with me – it should be left in the past, and life should move on. But more people tell me that there are so many reasons to keep it going, when I can. The biggest reason, aside from the help that I know it gives to other families who are on the same path as us (some wonderful families from the other side of the world have reached out to me to thank me for giving them something to hold on to when they staring to the same abyss at the start of their BA journey, which makes it all very worthwhile), is what it will give Hugo when he grows up. Ross is one of my biggest supporters here – he wants me to keep documenting our journey so that one day, when he is old enough, Hugo will be able to find the answers to the questions he will have. Answers that he will deeply need. And that, frankly, is more than enough of a reason to keep it going.
Morning chill with one of his many trains
We love our beach life
Sharking around at the paddling pool
So far, I haven’t really done a huge amount of processing about how everything he has already been through, and will continue to go through, will affect him as he grows up. Both Ross and myself are extremely conscious that it’s not going to be easy (at least to start with) for him to process, and for us to help him understand it all. He’s already aware that he has to take medicine every day, and that when we go to the hospital he has to sit still and be brave for the doctor, and that he’ll have a plaster (or sometimes four) on his arm after. But when will he realise that this isn’t ‘normal’? At what age will he start to ask questions about this – and how do we answer them?! How do we start to explain to a child the reality of why he has the scars he does, what his medicines mean, why he has to take them when most other kids he knows don’t? When do we even attempt to try and explain to him that he has a piece of his daddy’s liver in his belly? How do we give him the confidence to be proud of what makes him different, and protect him from those who suggest otherwise, who might make him feel ashamed? How do we make decisions for him that we know could potentially put him in harms way, but that we don’t have much of a choice over – primary schools, for instance; do we send him to a tiny school which could offer better short term protection against the risks he faces, or do we send him to a larger school, knowing that he could well be at greater risk here, but equally knowing that socially it would be preferable, and that it will probably ease the risks longer term? It’s still a couple of years until we need to answer that particular question, but as you might be able to tell, I’m already borderline obsessing about it – and I have no idea how we’re going to find the right answer.
That’s what worries me about looking to the future – there is no easy answer, just a lot of conflicting possibilities; protecting his health vs living life to the full. Sure, they’re not mutually exclusive, but they clash. Regularly. We’ve just got to find a way to make the right choices for him, and teach him to do the same for himself, when the time comes. We’re much better at balancing the risks now; he’s been regularly going to a playgroup since April (which tested my nerves but was so worth it; he LOVES it), but I still can’t quite bring myself to take him to a soft play centre. I hope I’ll be brave enough to, one day, but as much as I desperately want to just be able to let him go off and do all these things without a second thought, it simply doesn’t work like that. It’s something we’ve got to figure out as each decision comes along, all the while hoping that he continues to beast the hell out of being a post-transplant patient and confound the doctors who treat him.
Post hospital treat! Wowser!
My last blog was posted the day before Hugo’s last routine clinic at King’s in January (incidentally – this post is going up just a few days before his next one). Thankfully, it went incredibly well; the consultant we saw actually called him a miracle! He explained that Hugo is a bit of a rare case; they don’t expect to see a child of his age, so soon post transplant, doing so well on so little medication. Somehow, his body seems to have balanced itself beautifully (for now – TOUCHING WOOD ALWAYS). Ross thinks it’s because the liver is so genetically close to his own DNA. Whatever the reason, he gives the professionals the jitters a bit, and they seemed genuinely amazed at how well he was doing. All of his blood tests since then have been perfect; he is doing SO well (see above disclaimer). And we couldn’t be happier about it. We’re just keeping all things crossed that next week brings the same results.
Away from liver life, Hugo’s continued to develop, learn and grow (literally – the boy is SO tall) at the rate of knots. Honestly, he is like a sponge; I can’t even begin to list the new things he can do, say or sing now. All I can say is he makes us burst with pride at every turn. I just love being able to have proper conversations with him now – my current favourite is when he asks to “build a plan” in the morning so he knows what we’re doing that day, and then when he races to the door when Ross gets home from work so he can tell his daddy what we did. Barring the odd mishap here and there, he is pretty much potty trained. And even though he still has his moments (yep, the tantrums are still hanging around. Ugh), he is just so sweet and loving that he can almost get away with them.
My clever sausage
With nothing in the liver world preoccupying us in the last six months, we’ve managed to fit in quite a lot. Most of the time has been taken up renovating our new house; a total top-to-bottom overhaul in eight months was not an easy feat, and not one I intend on repeating any time soon (if ever), but one that has been totally worth it to create our perfect family home in time to relax and enjoy summer. Hugo had his second liver birthday on June 5th, which was lovely and low-key. Ross graduated with his NEBOSH diploma – given that he started his studies after we found out I was pregnant with Hugo, and everything that has happened since then, it’s an understatement to say this is an amazing achievement, and we are all beyond proud of him. I took a group of colleagues to volunteer at the Ronald McDonald house at King’s, which was awesome in every way possible. We’ve just made some wonderful memories with Hugo, our family and friends; we’ve even fitted in a couple of cheeky child-free nights just to add to the sense of ‘normal’, something I genuinely thought at one stage I’d never feel comfortable doing.
Found some goblins!
Monkeying around with mumma
Daddy and son on their liver birthday
Even with all of the many positives of the last six months, I still face internal battles about so much on a daily basis that can sometimes put a downer on how I see things; that stop things being perfect. Barring sharing the odd Facebook post, I try to keep them private; they can be hard to talk about without coming across as a sympathy-seeker (or so it feels) – but if I ignored them here, it wouldn’t be true. One of my biggest struggles is whether people judge me, judge us, for the decisions we’ve made about Hugo. Decisions which, I have to say, we believe are what’s allowed him to thrive and stay well enough to the point where we can relax the rules and live life with more of a carefree attitude now. I certainly don’t feel like we should apologise for the fact that we’ve taken the time to ‘normalise’ Hugo’s life slowly, at his (and sometimes our) pace. I also know that what other people say or think doesn’t matter – we know the truth and reality of it, and those who get it don’t question it – but it still upsets me. I just need more confidence, to have courage in my convictions and stop second-guessing myself, particularly when it’s not needed, because I know these battles aren’t going anywhere. I’m working on it.
Looking forward to the next few weeks, we’ve got lots to be excited about. Thankfully, we’re rather good at keeping busy so I don’t have too much time to overthink these things (although I’m sure Ross would disagree!); some much needed work-free family time, weddings, a trip to the New Forest, a new baby due in the family (not ours, I hasten to add), plus lots of picnics, hours splashing in the paddling pool, riding scooters along the seafront and hunting for goblins in the woods… just lots of memories to be made. Me, my handsome, healthy boys, and our wonderful family and friends.
Two weeks ago, on 5th June, we celebrated the best milestone of this whole liver journey so far – Hugo’s first liver transplant birthday! I remember the disbelief I felt when we’d reached nine months post-transplant, so you can imagine the emotion that came with the first liverversary. I managed to hold it together for a little family party in the morning, but once we’d got back home it hit me and there were more than a few tears shed – happy ones, of course.
It still sends shivers down my spine, to be honest with you; how Ross gave what remains to me to be the most heroic, loving and generous gift anyone can give in life – the gift of life – to our son, and how lucky we really are, in spite of the blips and bumps we are still experiencing, to all be here and living life together. That feeling of awe of what he did, and the joy of watching his unbreakable bond with Hugo, brings me happiness every day.
In the last three months, life has been hurtling past us. Mainly because Hugo is now hurtling past us; not only has our boy learnt to walk, he is now running around. All the time. Proud doesn’t even come close to the feeling we get when we watch him running around the park, bending down to smell flowers and chasing his ball around. It’s incredible. He has also, almost overnight, developed a total obsession for anything round or with wheels; now, rather than our flat being overrun with all things monkey, we are contending with trains, cars and tracks. He’s taken that momentous step from baby to toddler – you know, the one that makes you burst with pride while also suddenly and simultaneously realising, with a tinge of sadness, that your baby is growing up way too fast. And of course, part and parcel of toddlerdom is the tantrum, which Hugo is most certainly trying on for size now. He knows what he wants (normally Peppa Pig or chocolate), and if he doesn’t get it – especially when he shouts ‘TA’ at us (we can’t fault him for being polite at such a young age, although it makes it much harder for us to stick to our guns and enforce ‘no’) – he can activate Major Meltdown Mode at the drop of a hat. Although it is undoubtedly hard work, I’m also quietly a bit pleased that we have a son confident enough to be a bit headstrong, and – let’s be honest – that we’re experiencing the normal, shitty parts of parenthood as well.
Cool dude running
The funny thing is, even though life in general has been getting better by the week, in the last few months I think I’ve actually suffered more mummy wobbles than I did during most of his first 18 months. Before Hugo’s diagnosis, I was a completely stereotypical new mum, obsessing about every decision and scared that I wasn’t doing right by him. Then, of course, everything got taken out of our hands and our focus shifted to just getting him through, getting him the treatment he needed to get him home again. In that time, I didn’t really have much of a chance to over-think our parenting methods or choices, and I kind of thought that once we were through the experience I would inherently have the confidence or perspective not to worry like that any more. Well, I was wrong – it turns out that even surviving the storm we have doesn’t give you any immunity to the fears that existed before; even though I can see how well he is doing, and despite the fact that I know there is a much bigger picture to consider with Hugo, I still find myself worrying that I’m failing him somehow.
Whether it’s his diet (my major obsession), his physical milestones or his speech, I seem to be able to find something to worry about on a regular basis. I know in the rational part of my brain that Hugo actually has a quite good and varied diet – he eats loads of fruit, a fair amount of veggies, home cooked curries and broccoli muffins – but I still feel guilty that we buy him Ella’s Kitchen meals, and feed him waffles and nuggets. I know I shouldn’t, but I take it personally that some other kids of his age will eat everything and he doesn’t; I was so determined when he was born that he wouldn’t be fussy, so the fact that he is a bit makes me feel like I’ve failed, even though I know it’s totally normal. With his physical development, I know deep down that there is nothing to worry about – the fact that he is literally running and climbing everywhere now given he didn’t even have a chance to roll until he was about ten months old speaks for itself. It’s amazing, really. But, rather than delete it, I still worry when I get a generic BabyCentre email telling me what a typical 20-month-old should be doing and see a long list of things that Hugo hasn’t done yet. And even though he shows great levels of understanding, I still find myself focusing on the fact that he doesn’t say more than ten words yet, or that he can’t string a basic sentence together, rather than focusing on what he can do verbally.
I know it’s ridiculous, but I can’t help it. Mummy wobbles don’t listen to logic. In fact, they actively ignore the rational part of the brain. It’s not that I’m not proud of him, because I am – immensely – and it also doesn’t matter that I know all of this stuff is very normal; I just don’t know whether I’m doing enough for him as his mum.
First proper paddle was a hit!
Luckily, I have a new positive force to reckon with – Hugo’s childminder, Emma. Putting him in childcare in the first place was a really nerve-wracking, but positive, step forward for all of us. The first time we went to meet her I mentioned these worries to her, and she set me straight there and then. She told me to focus on what he is doing, not on what he isn’t, because he will develop differently to every other child, liver disease or not. Straight away I knew that she was going to be a great influence on him and me. The fact that she is giving me reassurance from a new and independent place (she had no involvement in Hugo during his illness, and only knows him as the child he is now) has really helped my confidence, and thankfully Hugo absolutely loves going there – he literally can’t get out of my arms and into the playroom quick enough when I drop him off.
My latest guilt is about his Hickman line. The team at King’s weren’t overly keen on taking it out; they wanted it to stay in a bit longer, but we were reaching a stage where he was pulling at it, scratching at the dressing, wanting baths – he just wanted to be free. We discussed it at length and they agreed it was clinically safe enough for it to come out, so in early May, just over a year after it was put in, we finally took the trip back to King’s to get it out. Life without his Hickman has been absolutely bloody brilliant – I never knew how much I would appreciate regular pj’s, and not having to put him in a blasted vest every day! He loves his baths and the paddling pool, although we still haven’t been swimming yet. More than anything, he just likes being nuddy, especially on the rare occasions that the sun gets its hat on and he deems it too warm for clothes! Unfortunately, it also means stabby bloods at hospital again, and the first set we had at QEQM a fortnight ago were really traumatic. And even more unfortunately, one of his liver functions was a bit high (still in range, but above his normal), so King’s have asked for a repeat this week; because his immunosuppression is currently at such a low level, he is at a greater risk of rejection and they have to make sure this isn’t an early sign of it. We then have his routine clinic at the start of July, so that means three sets of stabby bloods in a month, which is not what we’d hoped for. And of course, I’m worrying now that his body is starting to reject the liver, in which case he’ll need IV treatment that will be now be much nastier for him. I feel responsible for putting him through this nastiness, and even though both Ross and I stand by our decision – the improvement in his life makes it worth it overall – it doesn’t mean it’s easy to go back to it.
Playin’ silly waiting for his Hickman to come out at King’s
Loving his baths now 🙂
Having said all of that, I’ve also learned a very valuable lesson in the last few months. To pick my battles. So even though I may worry about that stuff, sometimes on a daily basis, I’m no longer letting myself get to the stage where I’m obsessing; I know that there may well be bigger, tougher battles that we’ll need to face at some point in the future, and I need to save my strength for them. And that in itself feels like a bit of a victory; I doubt any mum really gets away without any mum-guilt in their lives, but the trick is not to let it take over. I think I’ve become quite good at that in the last year, and I’m quite proud of myself for it.
The thing is, for all intents and purposes Hugo is a very happy, content little boy. I can sit there and worry about whether or not we are doing the best thing for him, or making the right choices, but he proves to me every day that we must be. He is learning, developing, laughing and growing into a headstrong, loving, clever little boy. And that (along with the odd glass of wine) is enough to keep me on the sane side of the fence – for now, anyway.
I don’t know how it happened this quickly, but today Hugo is nine months post transplant. Nine! We can now say that Hugo has officially been ‘healthy’ for longer than he was poorly. I say ‘healthy’ because things aren’t quite settled down yet, but still – how bloody incredible is that?! Incidentally, it’s also just over a year since we were first told that he would need a transplant, and also just over a year since I first published my blog.
It never really occurred to me that it was only just over three months between us being told Hugo needed a new liver and the transplant happening. It certainly didn’t feel like it at the time, but three months is not that long. Obviously, when you’re in the whirlwind of end stage liver disease, every day can feel like a year in itself, but now looking back at how quickly it really happened, it seems completely unreal. We went from having a poorly but stable baby in March, to living in hospital by the end of April on a continuous feed, regular albumin infusions and ascitic taps, with two failed attempts at the transplant in May before it finally happened at the beginning of June. What really strikes me now, though, when looking back, is how calm everything really is at the moment. Sure, things still aren’t completely settled, but it the insane and hellish rollercoaster of last year finally seems well and truly behind us.
There have been various points in the months since Hugo’s transplant that we’ve felt like this. Life begins to take shape again, we start to relax and then something happens that dumps a great bit load of uncertainty and anxiety straight back into the middle of our lives. And even though I know that the bumps over the past few months are really nothing in comparison to what we were fighting before, they can still hurt. Because essentially, all we want is for Hugo to be healthy, to be happy. And at the moment, touching wood, he is.
Day at the park with ViVi
Books. Just books.
In fact, he’s doing so well that we’ve got a plan in place again to get his Hickman line out. Of course, there’s a million and one things that could change and prevent this happening again – not to mention Hugo’s tendency to never, ever play by the rules – so we’re not going to get our hopes up too much (unlike last time) but the fact we’ve got a plan in place again is a massive step forward in itself. The last time this was being discussed was back in September, before his EBV became a real issue. Now, though, his bloods all seem to be heading in the right direction – I’m convinced that the new iron supplement he started a month ago is behind the improvement in his results; I don’t think King’s would ever officially agree with me, but given the consequences of anaemia can include low Hb and becoming more prone to infection, it seems to add up. Three weeks after starting the supplement, his Hb and albumin are back to normal, and the EBV is now the lowest it’s been since it first poked its nasty head up last summer. And the other really happy news is that his histology (biopsy) results from last week are now back and are all good. There are some tiny traces of EBV DNA in some of the cells, and a little bit of inflammation in the oesophagus relating to reflux, but most of the results are EBV-negative. They can effectively all but rule out PTLD, which was one of the major reasons the line was being kept in. It feels a little bit like Groundhog Day – they thought they had ruled it out in November, but this time it feels more believable, because this time he actually looks and feels like he really is well. And even though he’s been off his main immunosuppressant since November, his liver function is still amazing. So IF his bloods next week are good, they will be stretched out to monthly. And IF the next set is ok, and his ultrasound and review look good, then they will book him in for the line to come out. He’ll have one more set of bloods before the surgery date, and IF they are stable, then we’re going ahead. They are three great big fat ‘ifs’, but they’re tangible hurdles now rather than a never-ending stretch of not knowing. It’s a better, rather brilliant, place to be.
When we found out at his routine clinic in January that Hugo was anaemic, we did a bit of research about iron and the supplement he was given. Listed among the signs of anemia is lethargy and lack of energy, but he didn’t suffer from either of those things. The thing with Hugo is that, given that he became progressively poorlier from birth up to his transplant at eight months of age, we’ve never had a real gauge for how much energy he should have. He just kind of got on with whatever reserves he had, so every time we’d get on top of one part of his health and he’d improve, we’d kind of assume that we’d reached his optimum. So when King’s tested for the iron levels and asked if he had been lethargic, we said no. Because we really, truly didn’t think that he was – he’s always been so playful, so active, we had no cause to think that.
Still a swing junkie
Cuddles with daddy
Well, it turns out we were wrong. So, so wrong. At every stage of his life so far, he has amazed us with his tenacity, his jollity, his sheer strength. Now though, he is Hugo – but powered by rocket fuel.
His physical, cognitive and behavioural development has taken such strides forward that he’s pretty much hitting most of his milestones now, and following the normal patterns of mental leaps –given the obstacles he’s faced in his first 18 months, that blows my mind a bit! He now has some serious pace on him (he is all but running on his hands and knees), and is getting so close to walking; before the iron, he was only just able to pull himself up – and he didn’t enjoy it much at all. Now, he is cruising around the furniture and is taking steps with our help. Things seem to have just clicked into place mentally, almost overnight. He really knows his own mind now – and he certainly knows how to tell us exactly what he wants; he mostly enjoys being upside down, playing hide and seek in his tent and throwing balls all around the flat. He is a real bookworm, and loves cuddling up reading stories with us. He is a master stacker of all toys. He sings, he kisses, he chats, he claps, he cuddles, he climbs, and he laughs – all the time. He’s just incredibly self contained and incredibly happy. He’s also becoming increasingly cheeky and naughty, deliberately disobeying us when we tell him not to do something. He bites us, he throws tantrums and he grinds his teeth. As much as I don’t want a naughty child, even all of this makes me very happy (apart from the teeth grinding. I can’t STAND it). Partly because he has a real cheeky, knowing glint in his eye when he is doing it – we really need to learn to tell him off as he just makes us laugh too much. But mostly, it makes me happy because it is just completely and utterly normal.
Playing hide and seek with his ball
Story time with grandma
These are the kind of things that I expected to happen as a mum. They’re the kind of things that our friends and family experience day to day. It feels like we finally have something they can relate to with Hugo, and us with their kids. That’s what’s really lovely about life at the moment – it feels like we’ve finally got ours back. Yeah, it’s not the same as it was, and we’re still a bit restricted, but our new version of normal is actually bloody great! And we’re slowly starting to relax in terms of what we feel comfortable doing with Hugo – he’s having more play dates (and loving them – he’s a very sociable and friendly little boy), but we’re still avoiding baby groups and soft plays until at least after this flu season. We’ve got a good balance of routine and variety, and Hugo is thriving on it. He’s no longer spending 24 hours a day with me, and although it’d have been nice for him to have missed me just a little bit more when I went back to work in January, it’s been really good for him. Good for both of us, actually – being his mum is the single most amazing, fulfilling job I could ever have, but I totally lost all sense of myself when I was a hospital mum, and it’s nice to have a bit of ‘me’ back now. He absolutely loves spending a couple of days a week with his grandma and having more time with his daddy again, and what’s even better is he’s always really happy to see me when he’s not been with me for the day.
So yeah, life is pretty good right now. This is, without a doubt, the healthiest and happiest Hugo has ever been – and in turn the happiest Ross and I have been, too, in a long time. It’s impossible not to smile when you’re around that little boy – he is just so full of joy and life. I have to keep reminding myself we can’t take this for granted, that there are no guarantees, that we don’t know what may come around the corner; heaven knows we’ve had the rug pulled from beneath us enough times now. But equally, we’ve been through a hell of a lot to get to the stage we’re at now, and I just want to enjoy it while it lasts.
It’s got my head in a bit of a spin. A year ago, I’d just started maternity leave. I was happily nesting, eating cake and fantasising about what life would be like when my little boy came to greet us, totally oblivious to what the year had in store. Now, looking back, it all feels very surreal; blurry, yet very vivid at the same time. Somehow, time managed to slow down while the year flew by, and now we’re here. We’re nearly 16 weeks post transplant, we’ve been at home and hospital free for nearly three months (the longest EVER – touch wood, of course), and we’re fast approaching his first birthday. I feel like I don’t quite know how we got here.
Even though I’m obviously really super mega excited about it, I also feel a tinge of sadness when I look back over his first year. When I think about everything he has had to go through and overcome to get to this point, I can’t help but feel that way; no parent should ever have to question whether their baby will make their first birthday, but as his liver disease progressed, we did. I also feel a bit sad that we can’t throw Hugo a huge party to celebrate. Yes, I know he’s not going to know anything about it, and that throwing a party isn’t something I’d necessarily have done if things had turned out differently for us, but it’s one of the ‘normal’ things that I’m actually a bit miffed that we can’t do this year.
I know I shouldn’t really focus on it. I should just feel happy. But it’s hard not to reflect a bit; it’s just who I am. And honestly, I am INCREDIBLY happy and VERY excited. I also know that actually, we’re very lucky that we’re at home for his birthday (TOUCH WOOD!), as that has never been a given. We’ve made some tentative, weather-dependent plans – a picnic in the park this weekend with friends and family, and a trip to the zoo on his birthday. There will be a monkey cake and balloons, of course. And I know that wherever we spend the day, even if it buckets down with rain (as it has so far this week, grr) and we have to cancel all of our plans, we’re going to have a lovely day, because Hugo will be in it. We can’t fail to have smiles on our faces with him around.
My nearly one year old looking so grown up!
Other than my tendency over the last few weeks to think a bit too much about all of that, things have been really bloody good! We’ve had one full set of blood results back and are awaiting the latest EBV results, but everything – as far as we know – looks good. His LFT’s this week are still all normal, which is fab considering one of his immunosuppression meds was reduced to allow him to fight the EBV. And as for the EBV, it has come down from 2million copies/ml (which was up from 70,000 copies/ml) to 200,000 copies/ml, which they seemed to be happy with (although I don’t actually know what the level should be). They’re continuing with the fortnightly bloods for now, and keeping a close eye on it, as ever.
We’re hoping that he will be going down to monthly bloods very soon, because we’ve had a bit of news from King’s this week. We’ve been given a date for his Hickman line to come out! Obviously, we know from experience not to focus on the date itself, but the fact that it’s booked in is a real positive. It’s not for a couple of months, so we’ve got time to get his bloods stable and to the point that they’re definitely happy for it to go. We’ve found the Hickman line to be such a double-edged sword. On the one hand it has been such a massive relief to have it there, so we’ve not had to hold Hugo down for the doctors to prick him to take bloods or insert cannulas. But on the other hand it’s such a restriction – we can’t give Hugo a proper bath or let him roll around without a vest on, in case he pulls at it (which he tries to do) or gets it wet or dirty; it’s a direct line to his heart and a massive infection risk. So now we can look forward to relaxing around him a bit more, and letting him splash around in water again, but we’ve also got to start taking him to hospital to be pricked for bloods again. It also means another stay at King’s, another surgery and general anaesthetic for Hugo (he’s notched up more operations in his first year than me and Ross put together). Ultimately, though, it’s a really good thing; it’s the last piece of plastic leftover from Hugo being critically ill, the last telltale sign (other than his scar, of course), and it’s going!
In other news, Hugo started his physio sessions this week. Aside from us being absolutely soaked from head to toe by a passing white van speeding through a puddle on our way in to the hospital (about which I’m still fuming), and Hugo refusing to roll, prop himself up, or generally move at all while we were there after being a bit freaked out by one of the toys they wanted him to play with, it was pretty good. They went through some exercises for us to incorporate into his playtime to help him start to bear his weight on his legs and develop his core strength, and we’re already seeing a real difference! He can now plant both his feet on the floor with straight legs (before they were always a bit weak and ‘froggy’), and he can hold himself up on in the crawling position all fours on his own. All the while smiling and chuckling away at how exciting it is. I know this is going to sound really stupid, but even though I know that the reason he’s not done any of this yet is because of how long he’s spent in hospital, when I see all the younger babies achieving these milestones months before Hugo it makes me feel a bit of a failure. But hearing from the pros that actually, it’s just a lack of opportunity for Hugo that’s prevented him from doing it so far, and seeing such immediate progress, has really helped to snap me out of that particular mindset. He’s getting more and more motivated to move, and now I actually need him to slow down a little bit as I’ve STILL not baby proofed the flat…
At his physio session
Practising standing at home
Holding himself up on all fours!
So life, in general, is pretty good right now. We’re carrying on towards our own version of normal. Ross is fully back in the swing of work life, and I’m starting to think about going back to work now too, which fills me with all sorts of excitement and dread. We’ve had days out, nights out, baby playdates and visits from friends. I’ve somehow managed to stick to the exercise, although the weekly pizza has somehow wormed its way back into my diet (little sneak). We’ve got a mini break to the New Forest with the fam to look forward to in a few weeks, thanks to my mum. And Hugo is being a little gem to be with; he’s so happy, so cute, so funny, so lively and so loving, it melts my heart. He’s just so much fun to be around (even when his play starts to get a bit vicious and I lose chunks of my hair in his fists), and he seems to be changing and doing something new every day.
Collapsed on the floor after some rough play; you can’t see, but he’s holding me down by my hair!
Although he STILL won’t say mumma. He just laughs and says dadda when I try and coax it out of him. He’s a little monkey, but I wouldn’t change him for the world.
It’s hard to believe that Hugo’s transplant was three whole months ago. Where on earth has that time gone?! I realise that I’ve not written a blog, or given a Hugo update, for a while; we’ve had a pretty busy month, and thankfully it’s been without a single trip to hospital. August was officially full of home, fun and making memories. In fact, I think this is actually turning into our longest stretch at home with Hugo ever. Since he’s been born. TOUCHING WOOD!!
Before I get onto the Hugo update, I just wanted to do a bit more canvassing on behalf of the organ donation community. Tomorrow (Monday 7th September) is the start of National Transplant Week. The demand for organs is on the rise, due to a mixture of an aging population, alcohol and obesity. But there are fewer transplants happening; there are three people reportedly dying while waiting on the list every day. According to the British Liver Trust, 96% of us would take an organ if we needed one, but only 29% of the population is on the Organ Donor Register. It just doesn’t feel right; it DOESN’T ADD UP. Ross and I recently watched the BBC documentary, Transplant Tales, and we were shocked to discover that 40% of potential donor organs are refused by the family. This is one of the highest refusal rates in Europe. It’s not enough just to sign yourself up to the register; the NHS relies on your family’s consent to allow them to fulfil your wish. So this week, there is a call for everyone in the UK to discuss organ donation. Sign up to the register, but more than that, tell your loved ones what you would like to happen after you die. Talk about it. Actually, scrap that. Shout about it. Make it clear what your wishes are; one conversation could be the difference between you giving a desperately needed second chance to another family, or that opportunity being missed.
Of course, we didn’t end up needing a donor organ for Hugo. We were lucky enough that we could go down the living donor route. But this doesn’t detract from how we both feel about organ donation; we still lived on the torturous tenterhooks of the waiting list with Hugo for three months. He probably wouldn’t be here with us now, heading with great strides towards his first birthday, if he hadn’t had a transplant. His new liver has absolutely transformed him. We are living now, not just existing, not just waiting and watching.
This is a feeling that is only strengthened by the amazing and incredibly inspirational kids (and their families) we’ve met since we were thrown unexpectedly and unwillingly into the liver world nine months ago. Babies and children who suffer from an array of health problems, whose only chance of survival is to receive a life saving gift from a total stranger. Some of these kids have had their transplant; some are still waiting. We are lucky to be able to count these families as our friends, and watch with absolute joy and awe as they fight, thrive and survive against the odds. We go through their journeys with them, as they share in ours. If you ever needed another reason to sign up, then these kids are it.
We met all of these kids at some point during our various stays at King’s. All of them have had a new liver for different reasons. Eli had an liver disease that was so rare, they had to come up with a name for it – Notch 2 gene related liver disease; Tilly, Sam and Mali all had Biliary Atresia; Jess had pancreaticblastoma, a very rare form of cancer; and Harry had acute liver failure at 11 years old. They are all so strong, and such examples to all of us – all of the above pictures are post-transplant. They, along with anyone who has ever received a new organ, are the faces of National Transplant Week. They are why we need to turn the stats around. 29% of the population on the organ donor register?! It’s not enough.
So please, if there is one thing you do this week, it’s have that chat. And then tell the world. Get on Facebook, Twitter or Instagram, and use the hashtag #sayidonate and get people talking. Do it… Please.
As well as it being the start of Transplant Week, Monday also marks another milestone for us. After three months, Ross is declared ‘officially’ recovered and returns to work. He’s done incredibly well – for a man who can’t stand mess, and who happens to be married to a somewhat lazy woman, he must have been chomping at the bit to speed up his recovery at times. And aside from the few instances he’s been told off (both by me, and by King’s), he’s been very patient and let his recovery take priority. We’re both looking forward to him going back to work – it’s another step towards that thing we call ‘normal’, even though we don’t really know what that is anymore. It goes without saying that I’m incredibly proud of him.
Father and son playtime
I promise, he was having fun on Susie Snail..
As for Hugo… In general, he’s been really well. It’s not been totally smooth (when is it with Hugo?!), but nothing has happened that hasn’t been manageable. When his last bloods came in, the initial results were encouraging – liver function was normal, Tac levels were stable – so King’s told us his bloods would be going to monthly, a really positive step forward. But a few days later, we found out that his EBV DNA was raised. EBV is the virus that causes glandular fever. It is very common, and most people’s natural immune system is enough to keep the virus in check. But in immunosuppressed people, not only can it develop into glandular fever and result in that person being very poorly (and probably in hospital), but it can react with one of the meds and develop into PTLD – post-transplant lymphoproliferative disorder: cancer. King’s have reduced Hugo’s immunosuppressants to allow his body to fight the virus, and told us to watch out even more carefully (although I’m not sure that’s even possible) for signs of illness. This leaves him with a slightly increased risk of rejection, but this is something we’re going to have to get used to – the balance of risks being managed and decided by someone else. We have faith that the team at King’s know their stuff, and are always acting in his best interest. He’s had some repeat bloods now, and we’re just sitting tight for the EBV results. So fingers crossed, everyone!
As much as we feel like we’re settling into our groove now, when it comes to doing stuff with Hugo outside of my immediate comfort zone (that is, being at home, or out with Ross), I’m still struggling a bit. Yes, we’re having loads of fun, living life to the full and we’re making loads of lovely memories, but we’re still doing this within relatively tight boundaries at the moment. I want nothing more than to be able to completely relax and enjoy life as it is, to not worry about whether or not our plans might pose a threat to Hugo. I would LOVE to be a mum who could just take their baby to a social event or play group without a second thought, one who could happily hand her baby round groups of people without having to worry; not only is it good for him in developing his social skills, but he’s becoming such a heavy and wriggly lump now that it’s exhausting keeping hold of him! But I just can’t be that person… not yet, anyway.
First trip to the paddling pool
My little man getting stronger
He’s an angel. A cheeky angel.
Now that we’re starting to get back into (our own version of) normal life, we’re faced with the reality of what Hugo’s disease and treatment means for him, and for us. Although he’s no longer battling with end-stage liver disease, and he’s essentially healthy, he’s still not a ‘normal’ child. His liver disease has not been ‘cured’, it has been (and is still being) treated. On the face of it, he looks totally well, like any other child of his age, so I can understand that people think he’s totally ‘better’. But he’s at much more risk than he seems, and it can be hard to balance that knowledge with functioning in day-to-day life. I’m still too nervous to take Hugo anywhere crowded, so I either don’t take him, or I don’t go. We took him to a family wedding last week, and although the day was beautiful and it was amazing to be out with the family, I could also feel myself becoming increasingly anxious as the day went on; once he was at home being babysat for the evening, I finally felt able to relax. It still felt too soon. I’m slowly getting better at rationalising the risks and my need to be in control. I don’t feel myself physically tensing up when I sense a risk anymore – not as much, anyway – but I’m still a complete slave to antibac. The thing is, I know that as time goes on, he’s going to go off to nursery, to school, to work, and I’m not going to be able to protect him in the way that I can now. I’m just going to have to figure out a way to deal with that as and when the time comes, but for now I’ll keep doing what I can to protect him.
Anyway, Hugo’s really thriving in his own environment now. He’s a bit behind where he might have in his development been at this age, but I think that’s totally expected given how long he has spent in hospital beds during his short life so far. But he’s catching up incredibly well; at their recent visit, the local Occupational Therapist was surprised at how well he was doing, as his referral from King’s had suggested that he would need a lot of attention from them. He needs some physiotherapy; although he is rolling now, he needs some help in developing his leg strength to start crawling and standing. He is always trying to move about, so I’m sure once he’s shown how he’ll be off (that reminds me, I really need to baby proof the flat…) He’s taken to teething on my chin – something that’s becoming increasingly painful as his teeth get closer to coming through (any day now, we hope – he’s still 100% gummy bear at the moment!), but I love it all the same. He’s turned into a total chatterbox (dada, nana, bla bla, no and blowing raspberries are his favourites. Not mumma, of course), and he’s developed some incredibly cheeky characteristics. He knows when he’s being cheeky – he has a telling glint in his eye. It’s beautiful.
LOVING his ball pool
First real go on the swings
Mumma and bubba play
As the days go by Hugo is becoming more and more our baby, rather than our baby with a liver transplant. For so much of his short life, he has been defined by what he has been going through, and it feels as though we’ve finally turned a corner with this. Yes, it’s still a major part of him – it always will be, and we have absolutely no problem with that. But it’s just a part of him now, rather than being his all. He’s just gone from strength to strength over the last few weeks, even with a virus lurking in the background. I’m just so proud.
This is the first blog (for about four months, anyway) that isn’t going to be an update on Hugo, on how he’s doing. Partly because, really, there isn’t a huge amount to say at the moment (YAY). But mostly because this blog isn’t about Hugo, or us. It’s about the people that got us through the last few months, to where we are now; it’s about Team Hugo. During this journey, and where it has taken us so far, we have met some incredible people with equally incredible talents, and we’ve been touched by the overwhelming surge of support we’ve received at every corner. I’ve not really gone too much into this in my blogs so far, just because I really think that these people are so bloody special that they deserve more than a cursory nod here and there.
So here goes.
Anyone who knows me, or who has kept up to date with the blog so far, will know how pro-NHS I’ve always been, and how fiercely protective I am of it now. That’s because it is just purely and simply a bloody wonderful thing – I absolutely love it. It doesn’t even bear thinking about where we would be right now if it didn’t exist, or if we lived somewhere else in the world. We would either be financially destitute, or we wouldn’t have been able to get Hugo the treatment he needed. But we’re not in that situation, and that is 100% because of the NHS.
Aside from the specific people I’m about to mention, there were SO many people that were part of Hugo’s care at King’s. Doctors, consultants, the ward matron and housekeepers, anesthetists and the rest of the surgical team, Clinical Nurse Specialists, intensivists, dieticians, sonographers, radiologists, pathologists, occupational therapists, physiotherapists, social workers and psychologists… All do such varied roles, but each made such a huge difference to us – and they’ll continue to make a difference over Hugo’s childhood as he remains under their care. Each of them really does deserve their own tribute, but then I don’t think this post would ever end. So to all of these wonderful people, I just have to say thank you for being there; whether you were there on call in the middle of the night or as part of your routine day, you made a REAL difference, and one we will never forget.
It goes without saying, of course, that the nurses and doctors at QEQM are equally brilliant. They’ve also provided a lot of friendship and support, and shown great warmth when we’ve been on Rainbow. After being in and out like a yo-yo for the first part of the year, we then didn’t see them for over three months, and they still remembered all of us when we ended up back there. It makes our inevitable trips to hospitals less daunting, which I guess is the best we can hope for.
It’s hard to know what to say about the nurses that we got to know at King’s. This is a team of people that work several 12 hour shifts a week, on top of their studies, courses and catch-up admin they have to do after their shift. They are dealing with very poorly children, some babies just days old, and anxious parents. Yet they do their job with such unassuming kindness, care and attention that it doesn’t really feel like they are working. For me, while I was living on Rays for nine weeks, it really felt like we were all in it together. They comforted me when I was upset, they got me tea when I was struggling, they babysat Hugo and sent me away to Ronald McDonalds for some catch up sleep when I was wandering around like a zombie. They let me have nights off with Ross to get some quality time together, and mocked us for leaving hospital to go and watch hospital dramas. They listened to my rants and ramblings, and always put up with my moods with understanding. They took the mickey out of my sleep talking. I got the girls opinions of some dodgy purchases (I accidentally ordered a very dodgy pair of hairy trainers – don’t ask). They really took the time to get to know me, Ross and Hugo; they became our friends. I still feel a bit bereft without them. They are just absolute angels, such unsung heroes, and I wholeheartedly love them all.
Seeing Justine and Gill (Hugo’s advocates) really became a highlight in the day when they were around. They just did so much for us over the weeks we were there. They helped to alleviate our fears, and answered our often confused and difficult questions. They always really fought for Hugo’s corner, making sure they asked the right people the right questions to get the preferred outcome. They always came for a chat and a play with Hugo before or after ward round. Both of them really helped to keep me grounded in being Hugo’s mum, and reminded me of that whenever things were starting to get the better of me. They made me laugh, often (Gill, in particular, when she pointed out my unfortunate builders bum to the passing ward round – consultants and all!), and they appreciated and encouraged my love of wine. They are just genuinely lovely, kind and funny women, and I really miss them both. I know they know just how much their friendship and support meant to all of us.
I had a little less contact with Fiona, Ross’s advocate, but she was equally as lovely. Hugo’s transplant wouldn’t have happened as it did without her, as she does the unenviable task of coordinating the living donor programme. I clearly remember our first conversation, where she told me that her interest was not with Hugo, but with the donor. I remember being a bit taken aback by this, but when we met and she went through it, I totally understood why she had to be so firm – she’s dealing with parents of very poorly children who, quite understandably, want (actually, need) their child to be top priority, so would often have high-running emotions (yes, even me – I know, you’d never believe it!) And she does an incredible job. They have to make sure that they’re not going to put someone’s life or health at risk unnecessarily by going through the living donor programme – yes, Hugo needed a liver, but if it would have caused harm to Ross, it would not have happened. Everything she did was to ensure that Hugo DID get his liver, and as soon as possible, but in the safest way to Ross. And then, on the day, she was there in her scrubs, in and out of the theatres, keeping me informed all day. And always with a kind smile on her face. She, like Justine and Gill, made everything so much more bearable, and we’ll always have so much to thank them all for.
I always thought that the surgeons would be among the more arrogant of the people we would encounter at hospital (I blame the TV for this impression) – surgeons have to be super confident to do their job, and get paid a fair whack to do it, so that would mean a big ego, right? No, wrong. We had two top surgeons in charge of Hugo’s transplant. Professor Nigel Heaton, who was on Ross’s side of things, and Hector (I don’t actually know his surname – that’s how informal it was) on Hugo’s. They’re both at the very top of their fields, which was reassuring as I had to put the lives of my son and my husband in their hands. What really struck me about them as I got to know them was their unassuming nature. Hector was so gentle, kind and friendly – he would always pop his head in or stop to talk to us when he was on the ward, asking after Hugo. I had many bear hugs with Hector, he was just so comforting. Prof was more reserved than Hector, less chatty, but never rude or obnoxious with it. I wanted to give him the biggest hug once the transplant was over, too, but opted for a handshake instead. I am just so incredibly in awe of what they do. At the end of the day, they saved my son’s life, and they safeguarded my husband’s. There will never be the words to express just how grateful I am that we had such wonderful, talented men doing everything in their powers to do that. It’s very humbling.
Prof Heaton with Ross and Hugo
Not quite a bear hug with Hector
Ronald McDonald House
The Ronald McDonald house really was a haven for us while we were there. The house is just so full of warmth and a sense of compassion. Each and every time my mum, sister, Ross or I went there we were greeted with a friendly face and conversation. The facilities are just amazing; it really helped to feel like you had some semblance of a home life. There is a misconception, I’ve found, that they are funded by McDonald’s restaurants; this isn’t true. The charity boxes you’ll find at the tills go towards the charity, but they don’t get much other support from the chain. Nor are they government funded. They provided us with such wonderful – and tangible – support; there is no way that we could have afforded for anyone to be with me in London as much as they were without the house, and we are all so incredibly thankful for that.
One thing that has really struck both me and Ross during this is how incredibly lucky we are with our employers – Canterbury City Council and Holiday Extras. I’m still on maternity leave, so I’ve not had to take any time off so far, but Ross has obviously been working full time since Hugo’s diagnosis. And his work could not have been more supportive. They’ve enabled him to be there as much as he could be, encouraging him to take the time to be with me and Hugo, letting him put his family first without any worries or guilt. It sounds such a simple thing, but it’s not something that would automatically happen in this situation, and I am so grateful to them for allowing Ross to support me as much as he’s been able to. I went to see my work just before we ended up on our extended stay, as I was worried about what would happen when my maternity leave ended; I knew I wouldn’t be able to return to work when they were expecting me to, but I didn’t know what that would mean. I didn’t want to lose my job. And I haven’t. They’ve basically told me that my job will be waiting for me as soon as Hugo is well enough to go into childcare. I thought that would be the case – they work very hard at being a top employer – but it’s such a comfort to know that. We’ve got a tough few months ahead now my maternity pay has stopped (something that has been alleviated somewhat by our family), but at least I haven’t got to start again at the bottom of the pile somewhere I probably don’t want to work when the time comes.
The best mum and sister in the world
I’ll get onto the whole family in a minute. But I have to just say something about these two women. They are, without a doubt, the best friends I could have ever hoped for. They’ve been absolute towers of strength and support during all of this. Before we were in London, my mum would be here every day, doing my washing up, chores, shopping, just getting me through the day until Ross got home from work when I was struggling with it all. And then when we were in London she was there almost every week – often doing her crosswords, but there to keep me company and help in any way she could, big or small. Emily, my sister, has done so much to keep me sane during it all; making me take days or evenings out to be myself, talking to me late at night when she had work to do but knew I needed her, just always being there. They’ve somehow perfected the balance of letting me kick off or wallow when it was necessary, but also always calling me up on it when I was being unfair or unreasonable (something I know Ross will also be very grateful for!) I feel very, very luck to have had them there the whole time – they are the best mum and sister in the world, without a doubt.
Friends, family and relative strangers
We have had SO much support from friends and family, it’s been really overwhelming. The family have rallied round so much over the weeks and provided all sorts of support. They’ve driven back and forth from London to ferry either Ross, Hugo or all of us home over various discharges – sometimes at the drop of a hat. They looked after Ross when he came back from London first. They’ve provided shopping, dinners, and evenings off for the pair of us. Two of Ross’s sisters and his mum also set up a Go Fund Me page for us, to help us pay our bills in the period before I go back to work, which has given us such security and peace of mind to be able to focus on getting Hugo well, and not rushing him into nursery or childcare before his immune system is ready. They’ve given so much help, and we’re so grateful for it all.
Our friends have really kept us going. They’ve been so thoughtful and caring throughout everything, always taking the time to get in touch and ask how we all are, but what I really appreciate now that we’re home is the fact that they’re not pussyfooting around us. Many of our friends are also parents and they are, very rightly, not hiding or masking their own highs and lows for fear of upsetting us. We want to share in their joys and comfort them when it’s needed, too. Life goes on – something that is very easy to forget when you’re in the weird time bubble of hospital life – and it’s been so enjoyable coming home and slotting back into it. As much as our world totally revolves around Hugo, it’s also nice to be distracted from it and reminded about the wider world; that was something I really missed when we were up there, and something my friends have given back to me.
We’ve also developed a new and invaluable circle of support through all of this – the liver family. The mums and dads that we’ve met at King’s are the only people who REALLY get what we’ve been through with Hugo. Because they’ve been through it too. And even though they all have their own trials and tribulations to deal with, they still have the strength to offer advice and comfort (or a bottle of wine at the pub) when we really need it. They’re all incredibly inspirational and we feel like we’ve made some true friends during this journey, ones that we hope to keep for life. We’ve also had a lot of support from people we barely know, and some that we’ve never met. People who have commented on the blog, who have messaged me on Facebook, who have sent cards and presents to the hospital when we were there. Just random acts of kindness that are totally out of the blue and really lift our spirits.
It makes me feel very lucky, in amongst all the crap, to have such an incredible army of support behind us, that people are so invested in our baby boy. So to everyone reading this, whether you’ve been following Hugo’s journey so far or not, THANK YOU for being part of Team Hugo. We wouldn’t have got this far without any of you.
We are now just over eight weeks post transplant. That time has just flown by in such a whirlwind. We’re over the initial, really crucial first six weeks, and Hugo is doing so well (touch wood, fingers crossed etc. As always.) We’re not yet in a position to relax the rules though; following those is what has got him this far. It’s been over two weeks since Hugo’s last hospital admission, which is just incredible. I can’t remember the last time we’ve been this long in our own environment! Life in general continues to get better, more ‘normal’ (urgh), but that’s not to say we haven’t had our struggles.
The boys had their scheduled liver reviews at the start of the week (I don’t count this as a hospital admission). Hugo had the usual – bloods, ultrasound and examination. The ultrasound was vastly improved; the amount of fluid in the abdomen around the cut surface of the liver is now tiny, and the blood flows are even better than before. There were no concerns from the doctor, and we’ve still (seven days on) not had his blood results. I’m taking no news as good news on this one; something I hope doesn’t prove to be naivety on my part. We also had Hugo’s weigh in, and the little man has done amazingly well. He’s now just shy of 9kg, and is on the 43rd centile for his age. For a liver kid, that’s pretty awesome. We saw the dietician, and she was full of praise; she said that the work that we put into weaning Hugo before his transplant has really paid off, as he’s eating really, really well. It was a massive relief for both of us.
At King’s. Hugo had spotted his lunch!
Cafe cuddles after Hugo’s check up
Ross’s review was straightforward. He had his blood tests and a chat with the surgeon, and was sent on his way. He’ll need one more appointment and an ultrasound within the next few weeks, but then it’s pretty much a case of “see you in a year”. His liver will be pretty much back to full size now. Looking back, it really feels like transplant day could have been yesterday, not two months ago, and the fact that his liver has regenerated already is mind blowing. Ross has done amazingly with his recovery. It’s not been easy; he started doing a bit too much too soon, so he got a bit of a telling off at hospital and was told to take a step back to get a bit more R&R in. I think he’s (understandably) got a bit of cabin fever from being at home so much; he’s not been at work, and been physically restricted by his recovery so not been able to get back to his social life quite yet. But he’s nearly there now. He’s been far more patient than I could have been!
At the moment I’m finding life quite surreal. I’ve ended up seeing the last few months from different perspectives, which has been a bit eye opening. I spent one lunchtime while Hugo was napping scrolling back through my photos, enjoying all the happy memories we’ve created since being home… And then I hit the pre-transplant photos. They really shocked me. That probably sounds weird – I was there the whole time, so I knew how ill Hugo was, what he looked like. But that’s the thing. I was there the WHOLE time. I witnessed the progressive deterioration and saw the change gradually, over a matter of days, weeks and months. Unlike others (including Ross) who weren’t there 24/7, and would see a big change in his colour or belly size when they came up to London, I didn’t experience that. I never really had that shock while he was poorly. So when I was scrolling back and saw just how massively distended his stomach was, and how yellow he was – particularly his eyes – I was in shock. I could finally understand why people would sometimes be visibly affected by seeing him. I’m glad that I didn’t see him that way when he was that poorly; I don’t think I’d have coped at all well if I had. It makes me even prouder of how far he has come.
Then, on Thursday, we caught up with a BBC documentary called Transplant Tales. It really hit me hard, actually. I didn’t expect it to; I mean, we’ve lived it after all. But seeing it from the outside in was very strange – the wait, the uncertainty, the fear, the nerves of being taken into surgery. It all resonated very deeply. They even had a cancelled living donation transplant due to illness! I’ve done a fair bit of campaigning, of raising awareness, of the organ donor register since we were thrown into this – something that has been really well received through the blog, with friends, family and strangers all signing up (thank you, everyone!) – and this programme just highlighted yet again how important it is. In the last year the amount of people on the waiting list was higher than ever, but the amount of suitable organs available had fallen. People are dying on the waiting list. It just doesn’t add up. I get that people will have their reasons for not being on it, but I’ve also heard people say that they don’t think their organs would be usable. My response to that is – let the NHS decide! Sign up, and give them the option. You never know what you have that might save someone’s life.
Anyway, it’s been a bit tough. I think I’ve had a bit of an adrenaline crash – the massive high of being home has slowly petered down to just being in normal life, and as amazingly wonderful that is, during the high I wasn’t really conscious of the massive adjustment period I was in. Adjusting to being back home, living with Ross again, getting used to Hugo’s new routines, being both back in control again but now also having to share the control and responsibilities with Ross – all of them have taken their toll a bit.
I’m also on a mission to try and lose the weight I gained in hospital, and have found weaning myself off the diet I had up there has been harder than I thought; in theory, I want to go back to healthy, home cooked food, but in reality all I want is chips, pizzas and burgers. The carb withdrawal hasn’t been great for my mood, and I probably (definitely) haven’t been very nice to live with, but nine days in now and I think I’ve passed that period of grumpy hunger. I’ve also started exercising at a place called Boost (run by a friend) with my sister. It’s bloody hard work (especially since it’s been about 18 months since I last bothered to get off the sofa for anything other than a snack), but so far it’s also been really enjoyable. I’m getting a kick out of knowing that I’m doing something positive to help myself. None of that takes away from the fact that diets pretty much suck though, and I do spend a fair amount of time each day (and night) dreaming about pizza.
I guess it’s just life taking it’s course again. For pretty much this whole year, I didn’t have my own life; I had only one focus and that was getting Hugo a new liver. Now that’s happened, and we’ve had a really good stretch of him being stable and well, life has cropped back up again. It’s unsettled me a bit.
Don’t get me wrong; I’m not unhappy. Yes, it has at times been harder than I thought. I’ve been stressed and not the best company. But I’m LOVING being home. We’ve had some blooming wonderful days together, and a few firsts for Hugo. He had his first go on a slide on a family day out in Canterbury (he LOVED it!), he rolled over properly, he nearly said his first word this morning (“dadda”. There goes my determination that his first word would be “mumma”. Or “liver”), he went in his big boy car seat, and he met his (now four month old) cousin for the first time (he couldn’t keep his eyes off him!) We’ve spent lovely, long, lazy days at home, and had meandering family days out; just enjoying being together with no restrictions. I’ve caught up with friends over a few beers (and been gifted one or two hungover lie-ins), and we’ve spent some lovely days in the sunshine with sisters, babies, grandparents. Hugo continues to giggle and gurgle, and smiles his way through his day. It just takes one look at him to remember that actually, everything will be ok.
Picnic at the park
Hugo’s not sure about sharing with his cousin Violet
When your life is whipped out from beneath you, when you take your child to hospital for something relatively ‘simple’, expecting to take them home within a week only to be told that actually, you can’t, everything remains in a spin for quite some time. Living in hospital is a totally surreal existence, one that can only really be understood by those who have done it. I certainly became totally institutionalised up at King’s; barring two days at home and two days at QEQM we were there for 73 days, so I guess it isn’t really surprising.
Happily, we’re now back at home again. And Hugo has lasted an amazing ten days so far! Ok, we’ve spent two days at King’s in this time, but this was planned prior to his discharge. The team at King’s never figured out exactly what was behind his blip, despite all of the tests and scans. He seems to be over it, whatever it was. But because they didn’t diagnose, they couldn’t say for sure that it was dealt with, so they were nervous packing us back off home. Totally understandable. However, I had become rather desperate to get him out of there by then – he wasn’t receiving any treatment at that stage, only four-hourly obs by the nurses – so at ward round on Wednesday we pushed for discharge on the agreement that I would drive him up to London for day clinics whenever they wanted. And they agreed.
To start with, being back home was almost as surreal as living on the hospital ward. I had to find my feet again. It’s been a bit scary being away from the security blanket that the ward had become – and I’ll admit that I miss being there a little bit. Not in the sense that I want to go back; obviously, I don’t! But it became very familiar and I felt like I formed some real friendships up there (I’ve caught myself talking like some of the nurses, so I must have been around them for too long), so it’s strange not being around those faces and surroundings anymore. I’ve also been a bit nervous of getting too comfortable, just in case something else was to happen. But thankfully, things, so far, have been good. Really good.
There are so many things that I didn’t realise how much I had missed, how much I would appreciate when I got home. Little things that make all the difference. Such as…
Eating off a plate. Ok, that’s really boring. But it’s something I didn’t get in hospital – the canteen food came in polystyrene tubs and the ward only provided paper plates and plastic cutlery. Sure, I’d eat away from the hospital as much as possible, but even then you weren’t guaranteed a plate; burger on a board, anyone?! Chips in a mug?! NO. JUST NO. Put it on a plate, please.
Fresh, home cooked food. Mostly, anyway; I was pleased to see that the local pizza takeaway still had my number stored on their system. Having a fridge full of fresh food, and not having to label it ‘Hugo Wooding Bed 6’, is blooming lovely. I’m not even bothered with the washing up, something I NEVER used to do – it’s a symbol of normality to me, and I’m actually enjoying it… a little bit, anyway.
Being near my friends again. I’ve missed so much of their lives – growing babies, moving away, changing jobs; just life carrying on in general. It’s nice to finally feel like we’re back in the fold a bit. Everyone has been so excited for us to be back, but also really understanding of our restrictions at the moment, so we feel incredibly supported and very lucky. Which makes the whole transition a lot easier.
Living with my husband. Even though we spent as much time as we could together while we were at King’s, it felt a bit like we were back to dating – we’d spend a few hours together, maybe go for dinner, then we’d go and sleep in different places. It was a weird place to be in after seven years together, and it only really hit me how bloody awful it had been when I got back. Ross is still recovering, and is doing really well; his secret abs are healing (during his surgery, they discovered that his core muscles were actually really tight. Abs. They were a bit surprised, though, as no-one could see them…) and he’s getting stronger every day. Having some quality family time, on our own, and seeing my boys play together after everything they’ve been through is the best feeling in the world.
Having freedom. Having variety. Having my own transport. Not having to ask permission to take Hugo out for an hour. Being in charge again. Something that I definitely took for granted before, and something that I now appreciate more than anything. And we’ve certainly been making the most of it with slow walks and lazy days going where we want, when we want. Bliss.
Hugo’s cousin Vi was delighted to see him!
Meds. Gotta be organised!
Then, of course, there’s Hugo. Where do I start?! Well, first off, Hugo’s two day appointments at King’s were just that – DAY appointments. We’ve spent every night since being home in our own beds. His bloods are going in the right direction – his bilirubin is now nearly back to normal, his Gamma GT is now below 200, which is the best yet since transplant, although there’s still a way to go. His other key liver function tests are all within normal range, and his scan was fine. His colour is really good, his eyes are becoming beautifully clear, his poos are still nice and dark, and his pee clear. So far, so good.
Aside from Hugo’s clinical wellness, he has made one other major step forward since coming home. He drinks! Actually, he doesn’t just drink – he guzzles. We decided to try adding Nesquik to his milk last Wednesday, just to see whether it really was, as we suspected, the flavour that he didn’t like. And hey presto – just like that he started feeding, and he hasn’t looked back. He’s not even that bothered by taking his meds orally now. In fact, he’s doing so well that on Saturday, 116 days since we first started the NG feeding and 36 days post transplant, we took the tube out! This was a massive milestone for us – we didn’t think it would be out so soon. His feeding has been one of the biggest struggles we’ve had through all of this, and we’d have been happy if he was feeding and we could take the tube out by his first birthday in September, so for him to achieve it so soon is just incredible. And it’s made a huge difference to him, too.
Bright eyed and happy, moments after the tube was taken out
The boy starting to move about
Hugo has always been a happy boy. But his happiness has reached new levels, and losing the tube is a huge part of that. When he sees his bottle, instead of screaming and getting freaked out he goes crazy with excitement. Mealtimes have become so much more fun, as we don’t have to worry about him getting puree all over his tube tape; we can relax with him. He’s trying new flavours every day, and he’s even starting to eat some of the food I’ve made him. If he sees a Dairylea triangle, a yoghurt pot or a banana, he goes totally beserk. He HAS to have it fed to him NOW. He CAN’T wait, it HAS to be NOW. He’s a right little chunky bum, and it’s amazing. It feels like we really have our baby boy back now; he was always such a gannet in the first couple of months of his life, and we lost that part of him for a while. He has done us so, so proud.
Hugo is, in fact, so happy now that he won’t take naps. Even when he is clearly shattered, as soon as we put him into his bed he wakes up, ready to play. I genuinely think it’s because he now feels so well, he doesn’t want to lose any hours in the day to sleep. He has a jam-packed schedule of bouncing in his jumparoo, learning to roll (he’s really, really nearly there) on the play mat, sitting up, watching cartoons (normally Peppa Pig, which I absolutely love), flying, chatting, and laughing his head off to do. There’s just no more time for sleep.
I keep having to pinch myself to believe that this is our life at the moment; it seemed so far away at times, and every time it was nearly within my grasp it slipped away again. I know it may not last indefinitely; he’s going to face challenges as the days, weeks and months go on. But right now, this is what I imagined being a mum would be. He’s home, he’s happy and he’s thriving, and it makes the last few months so, so worth it.
Sorry for the delay between blog posts again. I know everyone has wanted an update. But I’m sure you‘ll all understand that my boys have been keeping me pretty busy… We’re now at day 13 post-transplant, and things (SO FAR!) seem to be ticking along in the right direction. Touch wood, fingers crossed, and all that.
Overall, Hugo is doing pretty blooming well. His bloods are generally within normal range now, with a few exceptions – and nothing the doctors are currently concerned about; they expect them to fluctuate a bit as things settle post-op. His ultrasounds haven’t highlighted any major issues. He’s now rid of all of the surgical plastic that adorned him for the first few days – arterial and neck lines, ventilators and breathing support, catheter and drain ALL GONE. And his jaundice is all but cleared (and his bilirubin is currently normal!!!) – his skin and eyes look amazing, even if I am scrutinising them somewhat for tinges of creaminess out of paranoia (and yes, my mum, Justine and Gill are all telling me off for doing this!), his wee is clear and his poo is dark! He’s still not drinking his bottle yet, but he’s tolerating the NG feeds and he’s doing incredibly well with his solids, and he’s gaining good weight – 100g in 4 days is pretty swift!
Hungry munchkin with mesmerising eyes
Two monkeys out for a walk
The important thing in amongst all of the ups and downs happening every day is that his liver is still working. His daddy’s liver is doing its job. His body is still dealing with what was, essentially, a major trauma, so it is natural for things to peak and trough as the days go on. They’re monitoring his bloods daily, keeping a close eye on liver and kidney function, immunity and immunosuppression. So far, it seems to be going quite smoothly. But this is Hugo, and he doesn’t like to do things the easy way. We’re all expecting a bit of turbulence. But one major comfort, to me, anyway, is that turbulence is expected, and isn’t by any means catastrophic. And because they’re keeping such a close eye, they’ll spot any potential problems at their very early stages. They’re on top of it.
The other thing I must mention is his mood. I’ve always been super proud of Hugo for maintaining such a sunny disposition throughout his life so far. And even though I was told to expect a difference in him post-transplant, I didn’t really think he could get much happier. Well, I was wrong. It turns out, he can be MUCH happier! On Wednesday evening (day 5), something suddenly clicked in him, and he just started kicking around, gurgling and smiling. It was almost as if he realised how bloody amazing he felt! And then on Saturday (day 8), he started laughing for the first time. Ever. A proper little belly-laugh – without a doubt the best sound I’ve heard in my entire life. It’s like he’s seeing everything again through new eyes – new, mesmerising white eyes – he never knew he was ill, so I guess he just didn’t know how well he could feel. It’s made me pretty giddy with happiness. The only thing missing from the picture right now is Ross, and home.
The boy flies!
Happiest mumma with a napping Hugo
As far as Ross goes, he’s been back at home now getting some serious R&R in before Hugo and I eventually make it back. He’s got a long old road ahead of him – 3 months off work – but he’s doing amazingly well so far. He’s had his first check up since being discharged and the Prof is happy with everything. Luckily, he’s had his mum with him the majority of the time while he’s been at home and I’ve been up here, with other family members all pitching in with a food shop, taking dinner round or just giving him some company and a helping hand. It’s taken a massive weight off my mind, and even though I miss him to bits, it’s much better for him to be home than for me to keep trying to look after both of them up here so soon after they’ve both had major surgery.
As for home… well, I’ve deliberately not been asking the doctors about home yet. And although they’re starting to mention the H-word, I don’t want to get fixated on a possible date, only for it to move and then to feel deflated. So even though I’m dreaming of it – my sofa, my bed, my bathroom, my family and my friends – I’m making myself remain focused on getting Hugo home WELL. If that takes more time, then so be it.
We have, however, started to thing about home in terms of the reality of Hugo now being a post-transplant kid. He no longer has Biliary Atresia. However – and this is a BIG however – his transplant is not a cure, and even though it has made him better, in that he is no longer a chronically and critically ill baby, it is not the end of his liver journey. His challenges have not disappeared; rather, they have changed. So I wanted to explain a bit about what this means in real terms for Hugo, and lay out some ground rules for when we do get him home. I’m sorry if this dampens the mood of Hugo being well a bit. I don’t mean to put a downer on the party. But it’s necessary. Ross and I don’t want to take the fun out of us being home, or out of Hugo’s life, but the simple fact is we have fought long and hard to get him back to being well. And we want to blooming well keep it that way!
Everyone following Hugo’s journey will know that he needed this transplant to give him life. But, even though it’s given him life, it’s not the same life as most other children will lead. In order for Hugo to do well with his new liver, he will be on immunosuppression (tacrolimus and prednisolone) for life. This means that he will be much more vulnerable than most when it comes to colds, viruses and infections. Yes, over the years, Hugo will need to develop his own immune system. And to do that, he will need to be exposed to various germs. But right now, at the start of this new – and hopefully improved – chapter of his life, he does not need to be exposed to anything unnecessary. For Hugo, certain viruses can actually be quite severe, and infections can be very high risk. Something that may just be mild to you or me could hospitalise him – he won’t be able to fight things in the same way. He will also be at a greater risk to some cancers because of his medication; glandular fever (EBV), in particular, is a known risk to him developing post transplant lymphoma.
So while we want to have the most “normal” (hate that word) life possible for Hugo, I’m sure you can all understand we’re not willing to take any unnecessary risks when it comes to his health. Particularly with Ross in his line of work! So, until we specify otherwise, these are the rules:
If you have any symptoms of a cold or virus at all, however mild you may deem them to be – STAY AWAY!
If you have chicken pox – STAY AWAY! Chicken pox can be very harmful to Hugo, so we must be informed if you think he may have been exposed to it at any time.
If you have a cold sore – STAY AWAY! One of the major risks he is exposed to is the cold sore (herpes simplex) virus. It is very contagious and can attack the liver directly, particularly in the first year.
No kissing Hugo on the face. See all of the above.
Always, always, always wash your hands – thoroughly. It’s the best defence we have against anything, particularly infections. Whenever you are interacting with Hugo, you must must must wash your hands. Before any contact, before feeding, after nappy changes etc. So don’t be surprised if you want a cuddle and we ask you to do this first. Hopefully, in time, this will become a matter of course – we know it already is for our close family. And I apologise in advance for the horrid dry hands you’ll get if you are around Hugo a lot – these are now part of the territory.
Speaking of cuddles – please don’t be surprised if we don’t hand him round for cuddles, particularly when we’re in groups. If we don’t offer Hugo cuddles, there’s probably a reason – so please don’t ask.
Please do not expose Hugo to smoke. Actually, this has always been one of our rules. We will not take him anywhere smoke-affected, and ask for you not to bring it to him.
The coming months and years are going to be tricky, but as things go on they will get easier. As Hugo slowly gets stronger, and his bloods start to stabilise, we will be able to slowly relax the rules. After all, he does need to go to school and work eventually – we can’t keep him wrapped up in cotton wool forever! But this process will take time. We are asking our friends and family to be patient and back us in this process.
One thing we don’t want is for people to feel like we have to be avoided. We would much rather you make plans and have to cancel them than avoid making plans to see us altogether.
The other thing we’ve discussed is the immediate few days after coming home. Although I’ve desperately missed everyone back home, we haven’t lived together as a family for nine weeks now. When we do get back home, we will want – and need – some time to adjust to Hugo’s new routine, his new meds and his new challenge, as well as just simply enjoying having him home and watching him flourish and start to catch up with his milestones (he’s already starting to sit unaided now). Just spend some much-needed time together as a family. Husband, wife and son. And jumparoo, of course! So for the first few days, we will not be seeing anyone – that means ANYONE. We won’t even answer the door. Once we’re bored of each other’s company, we’ll start to arrange to see people.
Gentle post-surgery cuddles with daddy
I hope everyone can understand and support us while we are in the transition period of being back home. It’s going to be hard enough, when the time comes, to be away from the safety net of the ward. Ultimately, the single goal we have – and we feel you share – is for Hugo to have a long, healthy and happy life. The last thing we want is to be under pressure to do things with Hugo that we’re not yet comfortable with. Please, give us time. We will get there. And, to be honest – if you don’t get it, tough. This is one area in which we are not prepared to compromise. But I know that those who are close to us will really get it and support us. So thank you, in advance, for that.