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A Perfect Mystery

Klara Miller

Words and photograph by Meg Fletcher Apperson

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One in a million children will be born with a craniofacial syndrome. Even more rarely, a child will be born with a unspecified syndrome; unable to be traced through genetics; unable to be named; unable to be diagnosed. Despite all my research, I do not know the exact statistic of this occurrence. What I do know, is that on March 27, 2015, I gave birth to one such mystery. Her name is Avery Jane.

There are no handbooks on how to raise a child like Avery. There are few doctors in the world who are equipped to treat or operate on her and even they consider her the rarest of the rare. These syndromes are always rare, but a condition that genetics has yet to unearth? Avery is truly one of a kind. We do not know her life expectancy and her prolonged quality of life remains to be seen, but we plan to keep fighting for her future as long as she does. 

Avery's labor and delivery was full-on war. It was not my first epidural-free experience, but certainly my hardest. Those two and a half hours were wrought with so much pain and fear that I couldn't escape. I wasn't afraid of the labor pains, but of what was coming. I was birthing new lives, Avery's and my own, and I had no idea what those Iives would look like. Also, I was alone. I wasn't alone in a physical sense, as I had my doula, mother and husband beside me because they were naturally a source of comfort, but very much in an emotional sense as only I could bring this baby into the world. The responsibility, pain and fear were mine alone and that realization made me feel as though I were standing on a remote island miles away from the nearest help. Similarly, the weight of her life would rest on my shoulders more than anyone else's in the days to come. My labor with Avery was a fitting rite of passage; a time of me being crushed so that she could come to be; a time of breaking so that she could live. 

While we knew a little about Avery's condition prenatally, no one had thought to warn me that prematurely-fused skull plates (the characterizing feature of craniofacial syndromes) would not compress in the birth canal like the average baby. I pushed for four eternal minutes and not a moment too soon, because, unknown to all of us, my placenta had torn away from my uterus and was coming out in shreds. 

Once born, Avery cried out one time and then fell silent and blue. Her nasal passages were too narrow and blocked by bone, so she was forced to breathe through her mouth and raggedly so, a concept that baby's are not expected to grasp for several months, during the phase known as "obligate nose-breathing". 

She couldn't nurse, which had been my greatest fear. Breastfeeding was my identity as a mother, so I began pumping every 2 hours, around the clock, in hopes that one day we have things sorted out and she would be able to attach. I was able to breastfeed her twice before she had a feeding tube placed in her abdominal wall and a tracheostomy that acted as her airway, but never again as her brain abnormalities made a coordinated suck almost impossible. She never learned to take a bottle or even so much as suck on a pacifier (something I never would have dreamed of trying with my other, strictly breastfed babies), but through dedicated pumping, her diet consisted exclusively of my breastmilk (which she was fed through her tube) for almost fifteen months. I'm a grateful over-supplier and in addition to pumping Avery's diet, was able to make enough milk to give my older daughter (fifteen months older than Avery) several sippy-cups full of liquid gold every day for months. 

For the first six months of her life, during which she had as many surgeries, she and I lived in the children's hospital, far from home. I slept on a ICU recliner more than I slept in a real bed, almost never my own. Often Avery would be given a clean bill of health and released, only to return to the closest emergency department 72 hours later as she became critical with yet another unforeseen complication. She would undergo four emergent brain and skull surgeries before the age of one (not including the scheduled, planned-for skull reconstructions that she needed every few months). In her short, little life, she has developed life-threatening sepsis, the origin of which is still unknown to us, slipped into a coma, suffered from seizures as a result of critical amounts of pressure on her brain and learned to adapt to life with a g-tube, trach and ventilator (only at night). Far too often, I've held her in my arms as she slipped from consciousness in a critical state, wondering if she would ever wake again; wondering if this would the last time I would hold her as her soul still inhabited her tiny, broken body. 

From what you've read thus far, you're probably thinking that this is a story about how horrible life can be; how sad and traumatic motherhood may occasionally become, but that is not the case. Ultimately, Avery's story is a tale of a warrior's will to live. It's a story of triumph, since, despite every set-back, she has thrived and bloomed beyond anything we could have hoped. Life with Avery has inspired me to be a warrior mama, more fierce and brave than ever before. I'm not worried about pleasing anyone anymore and I don't care how I'm perceived by strangers. I'm not responsible for them, only these little people that are in my care. The crushing and the stretching and breaking that I've felt over the last fifteen months has taught me to trust my instincts and trust the process. I've learned to keep fighting, even when all seems lost and I've learned to hold on to my faith, even when all I can see is darkness. We can always be brave. We can always choose joy. We are capable of more than we know. Avery's story is about hope that never dies and the love that drives us to hold on. 

Connect with the author through her Instagram @meg_apperson