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Isobel’s story

By February 27, 2019 No Comments

We’re very grateful to Isobel for this truly honest account of how having a child with liver disease has affected her:

It has taken me an awfully long time to sit down and write this blog. I had a blank canvas: no time limit, no word limit, no deadlines, no titles, just a blank sheet and a post-liver transplant baby. I write regularly, happily and freely, whether it’s a piece for a national paper or a short scrappy piece to accompany a picture of my toddler on Instagram. However, this blog has really confronted me: mainly because I wanted to write about mental health, in us, the parents or the care-givers of a child who suffers from childhood liver disease, whether pre-or-post-transplant. And as somebody who is now seeking help for what feels like a whole gamut of mental health issues following my daughter’s diagnosis with biliary atresia and subsequent decline into transplant – and post-transplant life- I wanted this piece to matter, to resonate and to possibly help others who read it, even if its to simply reassure you that you’re not alone.

Luna is my first and only child.  She is also the child I never thought I would have: it didn’t feel as though children would be a part of my future, I just didn’t think I wanted them. Until of course, she came along, and that love you feel for your own child that crumples your knees and makes you vulnerable, hits you as they’re placed in your arms. Like most parents, all I dreamed of was a healthy child, but something before she was even born rankled me and worried away at me. She was in hospital for a few days following her birth, then we were both discharged and life with a newborn began…for a few days. The biliary atresia diagnosis came around her third week of life, and mainly because my teenage years were fraught with really intensely bad hypochondria (which everyone found hysterically funny but now most of my family members find quite useful!) which meant I literally absorbed medical dictionaries like most girls my age would read Just Seventeen magazine. Therefore, I had an inkling (and a parental instinct) that something was ‘off’ with Luna and insisted with a clenched jaw and steel in my voice, that not only did she have to go straight to A&E but also have all those split-bilirubin tests that they don’t tell you about when you’re dealing with neonate jaundice. Anyway, a long story short, she had BA and despite a very early Kasai operation, sadly it didn’t work for her and she was listed for transplant when she was around nine months old as a priority due to no flow in her portal vein and various other terrifying end-stage liver disasters. She was given her gift of life on her third call, before her first birthday and we are now about five years post. It has not been easy, straightforward or restful. However, the curve has switched from one that felt like it was declining as fast as a rollercoaster, to an upwards curve, steadily reaching better health, better liver numbers and a greater sense of normality that was really compounded by the removal, finally, of her Hickman line.

You, as parents and caregivers of children with liver disease, know about the constant walk you share with Fear and his best mate, Anxiety. You will be familiar with the constant heart jolt of adrenaline when you’re waiting for liver numbers or trying to read the screen in an ultrasound suite. You’ll know all too well how it feels when your liver review date looms large. You’ll also be familiar with the endless stays in hospital: with the timelessness of it; the vortex of doing nothing but everything; the constant lack of peace and quiet and normality and food and fresh air and just being at home, being normal. You’ll know what it feels like when your friends with ‘normal’ children weep about taking them for their (live) vaccines- MMR, Rotavirus, and so on, vaccines that our babies can no longer have. You’ll probably also know that sadness that comes with having to fill in DLA forms and health care plans, and how gut wrenching it feels when that person leading the toddler group asks whether anyone has sniffles or cold sores or chicken pox as there is an ‘immunocompromised child amongst us’. Or how you long for ‘normal’ when your child’s school or nursery fires a round-robin email asking parents to be particularly vigilant about illnesses due to health complications of a child in their peer group and all you think is: ‘Where is my healthy baby?’ and if you’re anything like me, the worst question of all: ‘what did I do wrong?’.

Being human is hard. And none of it comes with guarantees other than that life is fragile, that everyone suffers, and that in the end, we all die. And pay taxes. And we all sort ourselves out in that knowledge and a good dose of gallows humour and ultimately knowing that time heals all. I think we are less good at asking for help. Although there is so much now about being mindful, present, kind to ourselves and so on social media and in the press at the moment, when we have a sick child, do we really ever think about that, or of our own needs? Not often. In my case, Luna’s life, particularly in the first year, and then following her transplant, was so full-on and emotional, I felt as though I was living on a cocktail of black coffee, more coffee, quire a lot of wine, and basically no sleep. Even if she slept, my mind didn’t. Whether I was making med charts, being her PA, or constantly trying to get her to put on weight whilst dangling her in the light trying to work out if she really was more jaundiced, I simply couldn’t catch a breath. And that, juxtaposed with a bazillion inpatient hours, all on top of having to watch my child slowly decline, was not only awful, but my brain must have gone into a sort of survival mode, meaning that even if I had wanted to confront any of this, I simply didn’t have the resources or emotional capacity to. And I am guessing that this will ring true with many who read this. However, as the dust slowly began to settle following transplant and as the hospital visits became less frequent, blood draws became monthly rather than weekly and the earth began to right upon its axis a little, something in me changed. And collapsed. In the thick of her illness and decline, I was surrounded by activity and pumped with adrenaline, dopamine and cortisol from the constant bad news and the occasional glimmers of good news: a better number here, or a good colour poo there. There were people around me the whole time: family, friends, doctors, nurses, community teams, dieticians, enteral feeding specialists, health visitors, clinical psychologists, charities, and so on, all asking if we were ok. Of course, I was far from ok, but always gave the answer I was ok, simply because I didn’t have the time to be anything other than ok!

But once the quiet came, and I had a ‘normal-ish’ toddler, the nightmares also came. The fear came. The anxiety came. I found myself pouring over social media: pages of children with BA, who had made it, who hadn’t made, who had died waiting for transplant, or died post-transplant, or thrived post-transplant. I became burdened with the worries not only that I had for Luna, but for a million other children. I would spend hours in the bathroom, at the end of each day, chasing these stories, sending out messages of hope and love and support. I couldn’t sleep well, and sometimes I would dream I had lost Luna. I would email our CNS every day with abstract questions. I would research and read medical papers and write reams of questions that once made our consultant order me home to drink the champagne that a friend had bought me post-transplant. I second-guessed every blood draw, every liver clinic and every phone call before suddenly and tragically, a baby closer to home did lose her fight and my reaction to her death terrified me into action. I finally sought help from my GP and our community nurse and clinical psychologist and I finally feel like there is light at the end of the tunnel- even if that light is a little wavering and uncertain. I don’t want to dwell on what those diagnoses have been: of ‘what I have’ or ‘what is wrong with me’, but what I do know is that the life us liver people lead is a hard one. It’s not normal. It’s not clear. It’s not guaranteed and more often than not, it’s not cured. We do live on, I think, a precipice and sometimes that black tide of fear feels a little too close for comfort and I am sure I am not alone when I say that in quiet times, my mind turns to the dark thoughts of ‘what ifs’. As parents and caregivers of liver children, we have to be brave. We have to carry our children and try and carry and absorb their suffering and pain, too. And of course, all of us would trade places in a heartbeat. But we can’t and actually, being strong sometimes is about acknowledging when it all gets too much and allowing ourselves to crumble, even if its momentary. But what I have learnt is that it isn’t helpful or brave or useful for me to punish myself with thoughts of guilt and with the stories of others. Our children have been sent to us for a reason: our responsibility to them is to honour their paths and to try and find some space to honour our own, as well. And sometimes that means finding the time to ask for help and acknowledging our own pain and struggles and sufferings too- its not weak to admit that the road we travel, as humans, and as liver humans, is a very difficult one that sometimes requires a better pair of walking boots.

If Isobel’s story strikes a chord with you and you have not yet sought help please contact our families team on 0121 212 6023 or email so that we can help you get the right support.

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