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A the choir announces the arrival of the birthday cake in the pediatric emergency room corridor of Lewisham hospital, London. If it weren’t for the paper curtain separating the hallway from our cubicle, we’d be at the party, but there’s a different kind of hustle and bustle where we are.
Two registrars, a junior doctor and a nurse are trying to draw my baby’s blood for the second time today and, after more attempts than I can count, have so far been unsuccessful. His face writhes, he screams, his little limbs shake. This needle irreversibly burst the bubble of new parenting. “I’ve never seen a baby with such low hemoglobin,” the doctor tells me, making a face.
This is just the beginning: a week (and then many more days) in the hospital; a journey through the navigation of tiny veins; a version of motherhood I hadn’t anticipated; a frenzied and cutting fear; field other people’s feelings about our situation; and a departure from the world I inhabited before.
When we arrived at A&E in May 2019, we thought we made history well, not at the beginning. Our daughter had been born eleven weeks and five days earlier from a slightly dramatic emergency cesarean in the same building. She arrived small but perfectly elven, with a lock of dark brown hair, curious gray-green eyes and an acorn-shaped nose: our creature of the woods. We called it Vida.
What followed was a list of typical problems of life with a newborn: fussy feeding, gruesome witch hours, low spirits on my part. If the medical examination and family doctor’s appointments hadn’t gone regularly and I hadn’t received compliments about Vida’s porcelain skin so often, I might have noticed her paleness, or listened more to the doubt that all was not well . But everyone said that having a small child was difficult.
So we continued and tried to integrate aspects of life before a child with the life of parents: walking the dog, food shopping; an afternoon at the pub. Vida cried for much of this, but it seemed things were getting better. Looking back, I realize it was simply that our skins were thickening, as was the texture.
Our arrival in the emergency room was the result of an appointment following a (apparently common) heart murmur. The pediatrician took a look at Vida and said she would need a blood transfusion that day. We stayed all week, and while my WhatsApp NCT group hooked up with links to nursing bras and baby washes, Vida was drip-fed with small amounts of blood to bring her hemoglobin (the protein in red blood cells that transports oxygen throughout the body) to a healthier level. Things got better overnight; so much that I realized what I was missing. Suddenly my baby latched on happily, nursing for long periods, his cheeks flushed like peaches.
But it didn’t last. We were discharged with orders to bring Vida back for bi-weekly blood tests: each revealed falling hemoglobin levels. Thus began a long summer trial to try and diagnose his 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 idealized interpretation of motherhood; and, while other new mothers basked in flat whites and waving the maraca, I searched furiously on Google. At the time of Vida’s diagnosis, seven weeks later, I could have been described as an avid amateur in hematology, but without the enthusiasm.
Vida was diagnosed with Diamond Blackfan’s Anemia (DBA). It is a genetic bone marrow failure syndrome, usually detected in early childhood and characterized by the inability to produce sufficient red blood cells. There is also a predisposition to certain cancers and the possibility of various other abnormalities. Treatment pathways vary and may involve a lifelong course of steroids; o blood transfusions every three weeks along with daily chelation treatment, to deal with the dangerous accumulation of iron; or, in some cases, a bone marrow transplant.
All of these treatments have implications. Steroids can affect growth and the adrenal system; regular transfusions tie you to the hospital; bone marrow transplant is a risky procedure that involves high doses of chemotherapy. Whatever our course, Vida will need lifelong medical supervision. DBA is a genetic disease, a spontaneous mutation; neither my husband nor I are carriers and, for now, there is no definitive cure.
Since July of last year, our challenge has been to reconcile Vida’s diagnosis with an otherwise healthy and happy child. As long as she is transfused regularly, ours is a normal life with a 20 month old girl: she loves cheese, applause and our dog who suffers a lot; he is finding his voice (it is strong); and we’re experiencing the usual litany of teething, interrupted nights, and a moth-like attraction to screens.
Children to have died of complications from DBA. Some have had profoundly limited lives, but many live normal and satisfying ones. However, for the parent of a newly diagnosed child, fear stifles hope. One of my regrets is that we lost control of our history while we waited for the diagnosis. I wish we’d had a vague party line for family and friends: just “It’s a blood disease.” But, in response to love and concern, word got around that Vida might have DBA, so like me, people did research, read outdated articles that had already panicked me, and made their own conclusions about her prognosis. “serious”.
People tried to be nice, but in the first few months it was difficult to manage their feelings as well as ours. But what do you say to someone for whom the unimaginable has happened? 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 adapt to the “new normal”, or that the conditions of Vida “is all he will ever know”. We need hope, but not trivial reminders of our difference. Vida’s conditions are written in every cell of her body, as inextricable to her as her strong voice. We have to celebrate what is, not what it isn’t. “Full of life, but not hemoglobin,” as my husband says.
My personal challenge has been to transform my dread and belief that we are somehow cursed into feelings of good luck that Vida is otherwise well and that we are lucky to have her. Over time I have learned to accept the arbitrary nature of things: mutations happen. One in 25 children is born with a genetic disease. Perhaps the biggest lesson was that conversations about disease should be less taboo and not shrouded in platitudes.
The best thing to say to the parent of a sick child is to simply ask how they are doing. The question “How is Vida?” she acknowledges that while you may be aware of her condition, she is also just a little girl who, like so many others, likes to sing, bananas and be responsible. It is important to underline that this open question also passes us a blank sheet of paper on which to tell our story. It makes me think of Joan Didion’s line, “We tell each other stories for a living.” As Vida’s parents, I like to think that our version is what matters most – to her and to us – and it was heartwarming when people were pushed into action, by donating blood or, before Covid-19 hit. , joining us in the hospital for a day of transfusion – Vida surrounded by her best allies.
A friend, a writer and a mother left our home with the right idea. “I came away after playing with the most delightful, smiling, strong-legged girl,” she said, after encouraging me to write this. “It could be a great way to frame things, untangle the mangle of thoughts, which for mothers are intertwined in terrible things …” So, here I am, writing, framing, untangling and owning our story, following that strong – girl with legs who likes to be in charge. Forward.
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