By Ann Kendall
PROMPT — If only ...
My Google alerts chime in daily, but I rarely open each one anymore. We’ve weathered quite a few seasons now, and most of the news delivered in these alerts have more to do with pharmaceutical market share than new treatments or discoveries. But last Wednesday, to distract myself from my endless to-do list, I opened the most recent message, and upon reading that day’s list of recent publications, one immediately grabbed my wandering gaze, “When a Bruise Isn’t Just a Bruise” from the American Academy of Pediatrics (AAP) blog.
I paused for a few long moments before I clicked on the link and gazed out the window over my desk — I wanted to concentrate on the reflection of the sunrise bouncing off the brick and glass building across the alley to center myself before going forward. In the past, I’ve seen links to abstracts to what I thought might be an affirming article, only to have my spirit dashed again, particularly if the source was scholarly. After what was probably no more than 30 seconds, I took the plunge and began to read jadedly – but my eyes could not hold my mind’s wishes to move forward. I found myself quickly and jaggedly staring from the screen to a small, quiet room far away and a series of moments that could’ve and should’ve changed everything.
The bruises started when she was three months old — changing her baby feet from sweet, delicious, squishy mounds of pink to glaring purple polka-dot lumps. We decided we needed to get to the pediatrician quickly, so my husband, David, took the afternoon off to attend the appointment with me on that rainy, foggy afternoon, just in case he needed to be there to help explain. The thing about rainy, foggy afternoons in Seattle is that if you must be inside, the winter humidity can alter the indoor environment to make it sticky to be inside — not hot exactly, but uncomfortable to breathe. The fog, while beautiful, when it happens in the afternoon, heightens the odd sense of being closed in because it’s impossible to see across the bay or sometimes even the street.
When the doctor arrived in our windowless exam room to examine our feisty kicking baby, David gave the quick run-down on his own diagnosis of Hemophilia, a rare X-linked condition and the necessary details. He kept his description brief, as our main concern was getting a blood test to find out if the impossible was indeed possible in our little girl. Even though we had taken off our coats, we were still overheating with the indoor temperature inversion the weather had caused — we were also fidgety with worry, foreboding, and an innate but unspoken knowledge of what may come. After the doctor prodded Baby Girl’s feet, holding them close to her glasses, poking, prodding, and manipulating, she said she needed to step outside and confer with her colleague. As the doctor left the room, she made no eye contact, but her white coat snapped toward me as she rounded out the door. She did not apologize for the brusqueness of her walk. I remember that she was wearing ballet flats, and once the door swung shut, it was hard to track her footsteps as we looked at each other, wondering what was next.
As both doctors re-entered the exam room, neither of them met our questioning gazes; one lifted Baby Girl away from me and placed her back on the exam table to again examine her in earnest with her colleague looking on. I’m guessing their fingers felt like the ice their eyes betrayed. I could not wait to extricate Baby Girl from this sprawling humiliation she was enduring — this time, it wasn’t just her feet and her ankles they explored, but her whole little self — she was too little to know how to protect her innocence from their bold, sweeping touches.
They told us calmly that they would make notes of the bruises but that our suspicions of the root cause of these bruises could absolutely not be the case because our daughter is a girl, and girls do not have Hemophilia. Because my husband’s Hemophilia is an X-linked disease, they said, and there was no reason to waste a blood test on this folly because the genetic reasoning just didn’t apply. On this day, the doctors followed this statement with what we thought was an odd disclaimer: We won’t take photos now, just notes. We knew as we left the office that their notes were really documentation — because they suspected us of cruel abuse. We left the office shaken, afraid, and ready to bubble-wrap my baby girl. Our concerns were dismissed and discounted by medical professionals with whom we had placed our trust. Instead of leaving with blood test results, we had been accused of a heinous crime against our own daughter, yet they didn’t have the guts to utter the words. On the ride home, I rapidly thought back to high school science, and to all our visits during my pregnancy with the perinatolist, rapidly scanning my memory for traces of knowledge I could resurrect on inheritance patterns of traits and mutations, but nothing really made sense.
I opened, “When a Bruise isn’t a Bruise,” and brought myself back to the day, Wednesday of this month and this year, not another Wednesday a decade ago. I have this wonderful office chair with armrests that often leave scruffy marks on my elbows because I lean on these so much, but on this Wednesday, I curled myself into the chair — waiting to read the worst. I quickly scanned the abstract for danger, but when I found no obvious red flags, I returned to the beginning and began to read with a much quieter mind. I proceeded to the full article to find that now, on this day, the AAP was recommending the children appearing with bruising in the emergency room, where there was a known family history of a bleeding disorder, should be immediately tested to ensure proper emergent and long-term treatment.
I hear rustling from the other room, so I’m brought back quickly from my time travel moment from present to past to future; I know that my morning reading time is about to come to a close. Baby girl will be 16 next week – the exact number of years the Centers for Disease Control estimates it will take a woman in the United States with a bleeding disorder such as Hemophilia to get a diagnosis. I sit for my last seconds of quiet, and I drift over all the times I say to myself, we should feel lucky; it only took us six years to find out our daughter had Hemophilia – that rare, and X-linked condition, that until recently the medical complex failed to acknowledge that women and girls are born with this genetic condition; women and girls might be termed “carriers” but not receive a full life-saving diagnosis and medications. Most women do receive a diagnosis until they are hemorrhaging during child birth or other traumatic injury and they are close to death; this will not be the case for Baby Girl – we are prepared, not just with the right doctors and the right medications, but also for the fight.
My fury with our first pediatricians still burns like a campfire that refuses to go out, the slow burn that may cause an unspeakable forest fire – those physicians, those women, who so cavalierly brushed off our concerns could’ve cost us greatly in indescribable grief. Women, in service to women, did not provide care for us that day, going against their Hippocratic oath to do no harm — they enacted six years of injury in those few short minutes when lack of curiosity and protocol to not just take a chance, and order a simple blood test. My burning embers are kept only in check by the needs of each day —the progress, the treatments, the work ahead and I am oddly thankful for those doctors’ complete ineptitude — I learned how to stand for battle in the face of ignorance and complacency.
As I gaze now back on the past, from battle to battle and also the victories, I know there is no way to prevent all the harm that will happen to a child over a lifetime. But our Baby Girl —she has been on alert — and has known her own mind since before her earthly birth. At 32 weeks gestation, she maneuvered herself into what I assume was a comfortable, horizontal position for the remainder of her stay on the inside. She somehow knew that this resting position, and her steadfast refusal to move into a more standard birthing position, would alert our doctor to plan a C-section — which ultimately was the safest way for her to greet the world —protecting her head from the potential injuries that take place in the birth canal. I secretly think Baby Girl made contact through the angels that brought that obstetrician to our lives, with her own steadfastness and directness; in her view, a baby who is forcibly turned from outside the womb most often results in a baby that goes right back to where it was comfortable, to begin with, and this leads to distress for everyone and emergency surgery. Her actions ensured that Baby Girl’s fuzzy little head, her brain, and her wishes were kept intact, with no bruises, no bleeding, and no hemorrhaging.
Baby Girl has not deviated from her initial imprint; over each hurdle and through each milestone, her protected brain guides her — the logical, observant child whose quest for language and words knows no bounds. As a toddler, the grocery store often brought her adventures to the eye level of an ant as she plied herself as near as she could to the underside of the store’s freezer section — so that she could touch the bolts holding the doors to the cold wall in her early quests to figure out how things worked. She arranged stacks of books, tilted in every direction, in our little home (and still does) as she voraciously consumed each one, over and over, a ravenous mind seeking nourishment, more content to create her inner webs and worlds, and host acorn parties with similarly tutu’ed girls at the local coffee shop than jump from trees, her days centered on frolicking dances and her favorite characters. Her vast vocabulary from all those books put her well beyond the million-word mark before kindergarten. In preschool, she would come home wondering why the other children ran in circles giggling while she was looking for a conversation. Preschool also led her to the most significant bruise of her life, one with no explanation — its size covering an entire hip, dark purple and black, irregular and hot — larger than one of her little hands. And she had no idea how it happened.
We were five years past the horrific visit with the pediatricians who were convinced we were causing the intense bruising on her tender baby feet. But clearly, something was amiss and we did not hesitate to put in a call to our new, younger pediatrician — whose response, “bring her in right away,” clanged like a church bell gone awry — those words signal danger, red flag, act fast. Upon arrival, one look from the doctor, a few quick words on my husband’s condition, and a blood draw. Spit, spot as Julie Andrews would proclaim joyously in The Sound of Music; efficient, we’ll take care of this, let’s not worry for now, but we’ll investigate and call you as soon as we know something, keep her as quiet as a five-year-old can be for now. Time slowed for about ten minutes, but then, because Baby Girl was in no pain, it was easy to silence the “what if she has it” chatter behind my ears. After 10 days, I began to wonder why we hadn’t heard anything, and it was also day 10 that my cell phone chirped with a message to call into the medical office. It would be appropriate to say that time stood still as I dialed the pediatrician’s office — but it did not — I had no fear of the call, no trepidation, no anxiety. I just was.
Patching through to the doctor, I grabbed a pencil and paper to take notes, just in case. The call was a hazy blur, and the only words that stood out, none of which I wrote down, were Children’s Hospital. The doctor explained that she hadn’t called for these past 10 days because these blood tests take time — these are not your average CBC tests. When the results came back with oddities that she couldn’t make jive, she immediately contacted a hematologist at the local Children’s Hospital for further analysis because she wanted something concrete to report. As the call went on, her words illustrated the confusing nature of the results. But there was no way, yet, to issue a diagnosis and she didn’t want to speculate — we needed intervention from a specially trained hematologist because whatever was going on with Baby Girl was a rarity. We were to report to the hospital later that week for this ongoing work and to meet the hematologist that would ultimately change our lives. Living in Seattle, we were accustomed to the ground shaking and shimmying from time to time — and depending on the type of quake, the movement of the earth could turn violent, wrenching bookcases from walls and sending canned goods toward ducking heads. Sometimes an earthquake would look and feel like rolling waves, pavement buckling, and heaving like a double-Dutch jump rope. This call though — was neither —it was the perfect pitch in between where the waves come, but a crater opens — more reverse volcano than subduction. There are few words more terrifying to a mother than a directive to head to a Children’s Hospital because the doctor does not know what is wrong with her child.
Entering kindergarten that fall, Baby Girl had new shoes, sweet plaid jumpers, a ponytail — and just before her sixth birthday that fall a confirmed diagnosis: Hemophilia A, with lower clotting factors than David, which caused the monster, hip width bruise that led to her diagnosis — and so many more intense contusions over her first years that seemed out of proportion to her playground injuries. Later on, she would experience more severe bleeding — with every lost tooth, each time she got a black eye because a shorter child ran into her face while running like kids do during recess and eventually every period that lasted for what seems like forever.
After school in those kindergarten days was magical — Baby Girl loved to jump on the boulders in the park by our home —all the kids did, joining up to run off their pent-up energy from a day of learning. The smaller ones held the hands of a caretaker; as they all hit five or six (like Baby Girl), they could usually make the leaps in between, usually without sliding to the crusty, dusty dirt that still shows some signs of disintegrating bark below. We had a crowd in those days — all the neighborhood kids and parents, easily gathering several times a day to hang out breezily, compare school anecdotes, and grab a coffee from the plethora of stands within sight distance. As Baby Girl leaped from perch to perch on that fall afternoon, when the leaves were barely tinged with tiny sprinkles of orange, one of the playground moms approached me — a look of concern on her brow. She probably didn’t mean for her words to come out as they did, “You don’t seem all that protective given your daughter’s condition.” She was not a mom that I knew all too well, but certainly, she knew of Baby Girl’s diagnosis: to ensure her safety in school and all its associated environs, we had been very open about her condition —telling anyone and everyone.
Even then, Baby Girl was already trained, using her vast vocabulary, in how to speak up for herself when she found herself in a jam with absent-minded adults whose focus was spread thin or amongst her peers for whom roughness was just the way six-year-olds communicate. Baby Girl already knew how to use her observation zone to assess risk and reward; we never shielded her from any in-office or on-phone conversation with doctors — she was allowed her space to observe and ask questions as she wished. She heard every word and saw every frustrated tear I shed when talking through the endless bills with insurance companies — this is now as much a part of her life as it is mine, an oddly natural occurrence in our house. On that day at the park, all I could tell the well-meaning mother was that we spend most of our time loving our daughter: we worry about her physical safety, but it is my job to let her be in the world and put the pieces back together when she falls.
Later that year, Baby Girl entered a neurological study to assess how young children may become susceptible to peer pressure. She bounded off one particular afternoon with the researchers while I stared out the window in quiet repose; an hour later, the researcher emerged to give me an update on her progress. Baby Girl was given over 100 photos to identify; then, the researcher brought in several people from a range of ages to challenge her naming of each object to ascertain her willingness to stick with her original hypothesis of the object or whether they could sway her. The researcher looked at me so seriously that I wondered what had been taking place, but as the report spilled out, I could not stop laughing. The earnest description and details coming from the researcher were heartening for each example, Baby Girl paused briefly, then gave a correct answer for all 100 objects — including the cassette tape. This 20-year-old object was the one they chose then to have her debate with the string of those brought in to challenge her — not once did she back down — not to the elderly woman, not the college student, and not to the child her own age. Baby Girl stood her ground without a flinch or a blink. The researcher concluded that Baby Girl would probably not suffer significantly from peer pressure and that she could pick out the stuffed bear of her choice on the way out as the team felt sure that she would have her own opinions on each aspect of the bear.
As I sit today, just a week or so from that AAP Google alert, we are preparing for our trip next week to a different Children’s Hospital and her next round of infusions that help her blood to clot and ease her bleeding. She is learning to infuse herself — carefully guiding a butterfly needle into a vein in her left hand, all while mixing her clotting solution, balancing it with saline, alcohol wipes, and a stoic face. Her veins are fragile from the lack of clotting factor in her blood — her veins are like high dive swimmers plunging into the deep almost as soon as we head to the car for our trip across town to the hospital — it often takes many pokes to hold any vein in place, and even then, it is not a done deal until all of the tubes are flowing in the right direction. She takes a deep breath before each poke, steadies her right hand, levels out the butterfly, and presses it gently into her smooth teenage hand — when blood comes back, a small cheer goes up in her eyes, though she dares not to move a muscle lest the vein decide to disengage. I do not know if I could do it; I do not know if I could do it to her — but I would.
Mostly I watch, in the present and in replay, of all the falls and calls, the doctors, the nurses, the unbelievers — I know she has won them all. Her horizontal existence of Week 32 is never really that far away from her countenance — she has a mercurial way of floating somewhere just above the infusion chair, with a clarity of vision that is well beyond what most 16-year-old girls could muster. Baby Girl’s (a baby no more) words are always with her — she was in the conversations that led her to be the conversation — she’s changing the way cases like hers are handled for herself and the others she has yet to find. She is undeterred – she has her power —she has her words — and she will lead other girls to their own possibilities. My embers glow and smolder to light the path forward — and when the wind comes in again, their sparks are ready to ignite and dissipate the shadows.
Not long ago, Baby Girl and I started listening to “Carpool Karaoke” on the way to her volunteer shifts at the local library, our favorite session the Foo Fighters. As the group chats casually with the host, James Corden, naturally asks the band do sing along on their drive. Band leader Dave Grohl, as he is famous to do, grows from his gut in his and melodically yells, “Are you ready?” The crew, including Corden begins to sing, heads nodding to the pounding beat of “All my Life,” with its opening lines, “All my life I've been searching for something / Something never comes, never leads to nothing / Nothing satisfies, but I'm getting close / Closer to the prize at the end of the rope.” Today, Baby Girl decided that the Foos should come along on her infusion journey as she sat at her desk, lining up her clotting factor supplies to give herself an IV. As she slipped the tourniquet onto her left arm, and began to make a fist in hopes that her hand veins would pop out clear as today’s blue sky, she looked over to me as I sat in my nearby chair, took a breath and slightly closed her eyes — then, as if she heard Dave Grohl whisper in her ear that it was go time, vein time, she growled out a rock and roll, “Are you ready?” As the last reverberation of her phrase left her diaphragm, she silently picked up the butterfly needle from its sterile cradle and slid it slowly, patiently into her hand. Tomorrow, her graceful left hand will be covered with bruises from the needle sticks made by her right hand; bruises for Baby Girl, will never be just bruises.
Ann Kendall is a mother first, writer second, and an English professor at Heritage University while also pursuing her MFA in creative nonfiction at Bay Path University third. She writes from Washington, DC.