chorus announces the arrival of birthday cake in the corridor of paediatric A&E in Lewisham hospital, London. Were it not for the paper curtain separating the corridor from our cubicle, we’d be at the party, but there’s a different kind of bustle where we are. Two registrars, a junior doctor and a nurse are trying to draw blood from my baby for the second time today, and, after more attempts than I can count, have so far been unsuccessful. Her face contorts, she squawks, her little limbs flail. This needle has burst the bubble of new parenthood irreversibly. “I’ve never seen a baby with haemoglobin this low,” the doctor tells me, grimacing. This is just the beginning: a week (and then many more days) in hospital; a journey in navigating tiny veins; a version of motherhood I hadn’t foreseen; a frenzied, cutting fear; fielding other people’s feelings about our situation; and a distancing from the world I inhabited before. By the time we arrived at A&E in May 2019, we thought we were well into the story – not at its beginning. Our daughter had been born by an only mildly dramatic emergency caesarean in that same building 11 weeks and five days earlier. She arrived small but perfectly elfin, with a mop of dark-brown hair, curious grey-green eyes and an acorn nose – our own woodland creature. We called her Vida. What followed was a list of problems typical of life with a newborn: fussy feeding, gruesome witching hours, low mood on my part. If the health visitor and GP appointments hadn’t gone routinely, and had I not so often been complimented on Vida’s porcelain skin, perhaps I’d have noticed her pallor, or listened more to the niggle of doubt that all wasn’t well. But everyone said that having a tiny baby was hard. So we kept going and tried to integrate aspects of life before a baby with life as parents: dog walks, food shopping; an afternoon in the pub. Vida wailed through much of this, but it did feel as if things were improving. Looking back, I realise it was simply that our skins were thickening, as was the plot. Our arrival at A&E was the result of an appointment following up on an (apparently common) heart murmur. The paediatrician took one look at Vida and said she’d need a blood transfusion that day. We stayed in all week and, while my NCT WhatsApp group pinged with links to nursing bras and baby washes, Vida was drip-fed tiny amounts of blood to bring her haemoglobin (the protein in red blood cells that transports oxygen around the body) up to a healthier level. Things got better overnight; so much so that I realised what I’d been missing. Suddenly my baby latched on happily, breastfeeding for long spells, cheeks flushed like peaches. But it didn’t last. We were discharged under instruction to bring Vida back for twice-weekly blood tests: each one revealed declining levels of haemoglobin. So started a summer-long process of trying to diagnose her condition. We left south London and took refuge at my mother-in-law’s house on the other side of town; we were transferred from our local hospital to a children’s hospital and then to another specialist; I deleted Instagram with its idealised take on mothering; and, while other new mums basked in flat whites and maraca-shaking, I Googled furiously. By the time Vida was diagnosed, seven weeks in, I could have been described as an enthusiastic amateur in haematology – but without the enthusiasm. Vida was diagnosed with Diamond Blackfan anaemia (DBA). It’s a genetic bone marrow failure syndrome, usually detected in early infancy and characterised by an inability to produce sufficient red blood cells. There’s also a predisposition to certain cancers and the possibility of various other abnormalities. Treatment pathways vary, and could involve a lifelong course of steroids; or three-weekly blood transfusions alongside daily chelation treatment, to address the dangerous buildup of iron; or, in some cases, a bone marrow transplant. All these treatments have implications. Steroids can affect growth and the adrenal system; regular transfusions tether you to hospital; transplanting bone marrow is a risky procedure that involves high doses of chemotherapy. Whatever our course, Vida will need medical supervision throughout her life. DBA is a genetic disorder, a spontaneous mutation; neither my husband nor I are carriers and, as yet, there is no definitive cure. Since July last year, our challenge has been to reconcile Vida’s diagnosis with an otherwise healthy, happy little girl. As long as she is regularly transfused, ours is a normal life with a 20-month-old: she loves cheese, clapping, and our long-suffering dog; she is finding her voice (it’s a loud one); and we are experiencing the usual litany of teething, interrupted nights, and a moth-like attraction to screens. Children have died from DBA’s complications. Some have had profoundly limited lives, but many live normal and fulfilling ones. Still, for the parent of a newly diagnosed child, the fear drowns out the hope. One of my regrets is that we lost control of our story while we awaited diagnosis. I wish we’d had a vague party line for family and friends: just “It’s a blood disorder”. But, in response to love and concern, word spread that Vida might have DBA, so, like me, people researched, read the outdated articles that had already sent me into panic, and drew their own conclusions about her “grave” prognosis. People have tried to be kind, but in the early months it was hard to manage their feelings as well as our own. What do you say to someone for whom the unimaginable has happened, though? I wouldn’t have known, either. “I can’t even imagine”, “I’m so sorry”: these platitudes exist for a reason – there is truth in them, if not real empathy – but it is alienating to be told that we have to adjust to “the new normal”, or that Vida’s condition “is all she will ever know”. We need hope, but not trite reminders of our difference. Vida’s condition is written into every cell in her body, as inextricable from her as her loud voice. We have to celebrate what she is, not what she isn’t. “Full of life, but not haemoglobin,” as my husband puts it. My own challenge has been to transform my terror, and my conviction that we are in some way cursed, into feelings of good fortune that Vida is otherwise well, and that we are lucky to have her at all. Over time, I have learned to accept the arbitrary nature of things: mutations happen. One in 25 children is born with a genetic disorder. Perhaps the greatest lesson has been that conversations about illness should be less taboo, and not shrouded in platitudes. The best thing to say to the parent of an ill child is simply to ask how they are. The question “How is Vida?” acknowledges that, while you may be aware of her condition, she is also just a little girl who, like so many others, likes singing, bananas and being in charge. Importantly, this open question also passes us a blank sheet of paper on which to tell our own story. It makes me think of the Joan Didion line, “We tell ourselves stories in order to live”. As Vida’s parents, I like to think our version is what matters most – for her and for us – and it has been moving when people have been propelled into action, either by giving blood or, before Covid-19 struck, joining us in hospital for a transfusion day – Vida surrounded by her best allies. One friend, a writer and a mother, left our house with the right idea. “I came away having played with the most scrumptious, smiling and strong-legged girl,” she said, after encouraging me to write all this down. “It may be such a good way to frame things, untangle the mangle of thoughts, which for mothers get twisted into terrible things...” So, here I am, writing, framing, untangling and owning our story, following that strong-legged girl who loves to be in charge. Onwards.