I am taking my daughter Abby for a routine comprehensive examination for her eyes. This is our first-time meeting with this Optometrist, Dr. B.H. She is dressed in plain clothes, observant, patient and kind. She greets Abby warmly, shaking her hand and welcoming us into her office. She makes a few jokes about the size of the chair Abby is asked to climb into. I sense an unusual comfort in Abby. She is immediately responsive to this Doctor, articulate and confident. I wonder what induces this calm? Is it because the doctor is dressed casually?
White coat syndrome is a legitimate thing, especially for someone like Abby who has experienced medical trauma. Fear of doctors or anxiety about medical office visits is common and often displayed by an increase in blood pressure basically hypertension. When we enter a medical office, Abby squeezes my hand with mega strength and wordlessly pulls herself under my wing. Her breathing is shallow, heart pounding, palms clammy. When the person in the white jacket makes a request of her, it feels as though she might break my hand. Her legs shake uncontrollably. Her body speaks a thousand words while her voice is out of reach. In an ideal situation, the person in the white jacket surmises the situation, creates small talk, warms up to her and removes the white jacket.
A bit of backstory:
Abby and her twin sister Libby were born by an unnecessary C-section three months early at one point two and one point four pounds, respectively. The procedure happened in a brightly lit room on a typical Monday morning in the OBGYN department at Stanford hospital. Her introduction to life was traumatic, taking place in the hands of strangers wearing white coats. My babies were taken from my womb after a series of Braxton Hicks contractions (false labor pains) that inadvertently qualified me for a surprise helicopter ride from our small community hospital in Santa Cruz to Stanford hospital in Palo Alto. I was all set for a natural home birth with the same midwife that easily delivered my first baby in the comfort of our home two years prior.
Let’s revisit the scene.
October, 1996. I am admitted to Stanford on a Friday without consent. The weekend involves a repetition of interventions indicating that the signs of labor have stopped. When Monday morning arrives the head OBGYN is at the head of my bed with his eyes fixed to his clipboard announcing, “it is time go to the O.R.” I remember over the weekend a promise I am given that a professional technician will arrive with a working ultrasound imagining machine to generate a clear picture of the size of my babies. At this point they guess my babies are two and a half pounds. This is not the case. He is in charge. I am on a medical trajectory that does not include my voice, the experience of my body and the actual size of the babies. I am told that two and a half pound babies are able to be born vaginally.
After two strong doses of Pitocin in pursuit of a vaginal birth my body fails to comply to the doctor’s schedule. They decide an emergency C-section is required to “save” my babies. I receive ample medication to insure I do not feel the incision. I am present on the periphery of an experience that I imagine is not my own. I sense my first baby being lifted from my womb. This is Abby. She is one pound and two ounces. I feel her fighting spirit. She cries, kicks, screams ceaselessly. She is desperate to survive, fragile and unable to regulate herself. This behavior conundrum makes it difficult for her to sleep or gain weight, something she urgently needs. I feel her cries calling for me, her momma, her refuge.
On day two I am led to the Neonatal Intensive care Unit to see my babies for the first time. Abby is laying on a tiny flatbed hooked to monitors surrounded in something that looks like bubble wrap. I carefully reach in through a small circular opening to lift her. She is asleep or drugged. I don’t want to startle her. I whisper, “Baby, it’s mama. I’m going to hold you.” She is tiny, smaller than my hand. I feel her tiny fingernails like pins scratching against my chest, reaching. She latches onto my breast in lightning speed re-igniting our attachment bond—the love cocktail that is denied to any woman deprived of her body’s natural ability to produce the hormone and neurotransmitter oxytocin that is released through childbirth and breastfeeding. Oxytocin is like a long continuous hug that signals to the nervous system, I am held, I am safe. This is necessary for a trusting bond between mother and baby and for development to unfold with greater ease. Abby empties my second breast and puckers off into a deep sleep. Unable to take my eyes off her, I feel her with every aching fiber of my being. I am yearning to bring her back inside where she belongs. When she isn’t nursing or sleeping, her eyes are fixed on mine, perfectly straight.
The eternal moments of Abby’s eyes gazing into mine feel like a wordless etching upon my soul. I feel her speaking to me. These intimate moments are not able to be forgotten. I’ve heard and read many times that the eyes are the windows to the soul. When our eyes meet in this way, we see beyond the physical to a felt sense that weaves itself through an unknown tapestry on this journey we call life.
Shortly after birth, Abby is diagnosed with necrotizing enterocolitis (NEC), medically defined as a devastating disease that affects mostly the intestines of premature infants. The wall of the intestine becomes inflamed and can ultimately destroy the wall of the bowel. I intuit that being left to cry for prolonged periods in an overstimulated environment without the protection of a caring body contributes significantly to the condition of the gut.
A specialist from Canada is flown in to perform an emergency surgery. It is an extremely rare occurrence to operate on a one-pound baby. I am told the chances of success are slim. When the intestines of a one-pound baby are cut open, there is a forty-five-minute window to complete the operation. After the procedure, I’m told they had to remove the entirety of her small intestines which means she will require alternative feeding methods (a colostomy bag and ongoing medication) and eventually have her liver removed. We have a three-month waiting period before they will open her again to examine the condition of her intestines. Amazingly, the entirety of her small intestines grows back. The doctors report they have never seen this happen. I believe it has to do with our attachment bond: time at my breast with my milk, introducing kangaroo carrying to the nurses willing to carry her in a sling when I cannot be there. Moreover, my persistent refusal to allow anyone to “fatten her up” with commercial formula and the chemicals contained therein.
The next surgery required is for her eyes. I am told she has retinopathy of prematurity and will be blind if she does not have laser surgery on both eyes. I am absolutely certain that our eyes meet straight on and see each other. I feel her seeing me. The Ophthalmologist insists that she requires this high-tech laser surgery to insure she will have vision. He contends it is crucial and that there is a small window of time in which to procure vision. I reluctantly mutter, “Okay.” What do I know? He’s the authority.
The surgery happens. I am not able to be present. I pace waiting. I hold her as soon as I am able. I am at her bedside so often that a nurse named Akura brings in a cushioned chair from the waiting room. I call it my friendly green chair reserved for grief. Abby has patches on both eyes that will stay there for three days. She is heavily medicated and sleeps often. Her suck is still very strong. To me this shows a robust survival instinct. This gives me hope while at the same time unbearable thoughts whirl through my mind. What if she is blind?Followed by another that negates this, she sees me, I am sure. The day arrives to take the eye patches off. I can’t do it alone. I ask my new friend Akura if she will be with me when I take them off. Slowly I peel off the patches, one side and then the other.
I cannot see the pupil of her right eye. Her eye is turning in on itself. I see white with bloodshot veins. I ache. I feel my heart-rate increase, my breath panting. My body screaming the color red. I say to Akura, “Where is the surgeon. Please. I need to speak to him.” The next day when he comes in I tell him, “It’s not right. Her eyes were looking right at me. Now they are not.” He stands tall in his white jacket insisting that the eyes now need time to heal. He says, “Her eyes are better now,” like a proud boy that just repaired a broken toy. My baby is not a toy.
This is the beginning of a rollercoaster ride with Abby’s vision. It takes time to understand how much Abby is able to see. She can’t tell us until she is able to articulate her experience. She learns many functional tasks through a neurological development program that incorporates oxygen to support healing brain injuries. Abby is an unstoppable force. She is usually willing to do all kinds of therapeutic routines. Her childhood is centered around a variety of therapies that I seek to implement daily. I turn our home into a developmental play school, all geared to heal Abby and Libby’s traumatic brain injuries from birth and improve function. I’m not always up to the task I set before myself, yet I am unable to stop.
While she is still quite small, we explore traditional options for Abby like glasses and eye patches. Eye muscle surgery is highly recommended to straighten her misaligned eye. Everything inside of me does not want to subject her to another surgery and round of anesthesia. I cave in under pressure from well-regarded professionals in the field of Ophthalmology and Optometry. When we do not see improvement, I am told her eye muscles are too weak from the laser surgery. Damn, why didn’t the surgeon in the NICU inform us of this risk? Now in addition to a misaligned eye (strabismus), her eye begins to wiggle (nystagmus). I am given a box full of eye patches and told that additional time covering her stronger eye will help. I’m not convinced.
Fast forward to age six. We are living in Pennsylvania and working with a progressive holistic healing center for brain injured children. Abby is still not able to walk independently. We are unsure of what her actual visual experience is. Every part of her development is delayed accept her inborn curiosity for life. The fact that she isn’t walking and possibly not seeing very well does not stop her from exploring everything. She empties baskets, cupboards and crawls her way to investigate every inch of our home. When people visit us and park their shoes at the door, she wears a shoe on each hand and creeps around the house as if to get to know each person through their shoes. One time she went missing. I found her in a kitchen cupboard curled up with her head resting on a thick potholder.
The brain injury center gives us a six-hour-a-day and six-day-a-week program to bring more oxygen to her brain and improve function in all areas of development. This includes moving, seeing, feeling, grasping, hearing, smelling, and speaking. Did you know that the eyes requires more oxygen than any other organ to function? Any activity that increases your oxygen level improves the health and function of the brain. We take up a structured program of patterning, creeping, crawling, walking, and oxygen based on intensity, duration, and frequency. I hire an assistant to help us.
Most of the equipment for this program we make at home. We construct a twelve-foot walking track similar to a track for parallel skies or snowshoes with a medial support cushioned with leather centered from her feet to her crotch. She practices walking back and forth on this track two hours each day with weaning assistance. We make an arm splint to support the increased tone in her right arm for creeping on hands and knees to strengthen midbrain function. We carefully consider creative ways to keep her motivated in what could be called brain development bootcamp and find that the most rewarding way to keep Abby engaged is to roll up our sleeves, get down on our hands and knees and work with her side by side. Certain days require buckets of clowning and ingenuity to get through. We’re committed and realize remarkable improvement. For example, her energy level and speech continuously improve. One day, about three months in I find her grabbing the handrail with her left hand to successfully climb our wooden staircase. She says, “Mom, I’ll be right back I need to get my sweater. It’s cold today.”
Six months into our routine, Abby drives with me to pick up her older sister from grade two at the local Waldorf school. She asks me if we can stop at the health food market for a treat. It is a beautiful spring day. I’m happy to have some additional time outside. We pick up her sister and drive over to the market. I notice that Abby is more confident in her walk. She knows exactly where to go to find her frozen treat—chocolate covered rice dream bars. She gathers three: one for herself, one for her sister, and one with nuts for me. We sit outside at a small table engulfed with lilac fragrance and quietly enjoy our rice dream treats before they melt in the warm air.
On the short drive home there is a curious silence. Abby is usually set to run a monologue about whatever is currently on her mind. I can’t make out if this uncommon silence is anticipation or dread. What is brewing? I let it linger. We arrive. Autumn is the first to head to the house, ready to play with a neighbor from her classroom. I dash out of the car to assist Abby out of the back seat. Before I open the door, she tells me, “I got it.” She slides the door open, turns herself around, and climbs out without any help. I’m impressed. Our driveway is made of loose uneven gravel. She grabs my hand to steady her gait. We continue walking past the garage onto a dirt path that trails through our garden to the back entrance of the one-hundred-year-old farmhouse we are renting. Abby usually walks with her head down watching for what is directly in front of her. This time her head is held high. She is scanning the garden. Suddenly she stops and announces, “Mom, we have flowers in our garden. They’re yellow.” I tell her, “That’s right. These are dandelions. This is lemon grass. Those closer to the house are tulips.” “I know.” This is the first day that I am certain she has vision and that she can identify the color yellow.
I’m tickled with encouragement to continue the course we are on throughout the summer. We discover a healthy juncture in Abby’s development, though she feels socially isolated. Her home program lacks a community element. She wants to go to school like her sister. She wants to belong to a classroom. Our classroom of one is no longer working. We take some time to explore options. It is not an easy process for Abby to be accepted into the same school as her older sister. Eventually she is able to obtain admission to grade one with a classroom assistant by her side.
Many years of adventure, exploration and navigating educational, social and community challenges unfold supporting Abby to navigate a world designed for abled bodies with typical vision. I spend time color coding kitchens and bedrooms, laminating signs with large dark print on white background, embarking on a variety of reading programs, and ensuring all environments are uncluttered, well-lit with clear pathways. Abby requires enlarged print, tracking devise, eye breaks and technology for the visually impaired. In high school she is given mobility training with a walking stick with an exceptional vision therapist to attend to her blind spots. We find Suki, our service dog, to be the silver lining for visual impairment. He is a treasured memory of our family history that brought all of us immeasurable joy for twelve years before he died the summer of 2017.
Now, in the spring of 2021, Abby is a twenty-four-year-old badass woman that is over the moon about dance and keen on performing in an upcoming production.
We arrive to our scheduled appointment with Optometrist, Dr. B.H. that Abby is meeting for the first time. The doctor enters the office we are waiting in dressed in plain clothes. She is not wearing a white jacket. She speaks directly to Abby as if I am not there. I like her approach. Her tone is warm and friendly. With a gentle smile on her face, she extends her hand to Abby as if to say, we are on the same team. Abby shakes her hand with a confidence. Dr. B.H. makes a joke about the size of the examination chair and offers to help Abby into it. Abby breaths out a laugh without any obvious signs of stress that are commonly present for an office visit.
Abby is happy to climb into the oversized chair to begin the exam. Dr. B.H. is observant, patient and kind, informing her of every step along the way. She gives Abby ample time to respond without pressure which seems to add a measure of ease. Abby is not anxious or embarrassed. I am sitting in the room on pause, observing this for the first time. Throughout the exam three things are happening. First, Abby is clearly able to articulate what she can see or if she needs it to be a bit larger. Secondly, she is not hesitant to say what she cannot see. In the past she would not say anything, as if crawling into a dark corner to hide with shame. Third, Abby is perfectly still to receive the drops to dilate her pupils. No squirming or shaking. This is the part of the exam that I usually dread. Amazingly, her trauma response does not kick in. My mind is blown. The doctor reports that the health of her eyes is excellent. Often people who have had laser surgery have risk of retinal detachment.
Abby is not made to feel like she is failing an exam. She is not ashamed to say what she can or cannot see. Not on this day. Not with this doctor. At the end she says, “I do not want a stronger prescription. I don’t want the glasses to do the work that my eyes are still learning to do.” I gather that the Doctor is impressed. She says, “I’m not going to suggest anything stronger. You are doing very well. I have never met anyone with retinopathy of prematurity that can see as well as you, in fact that has any vision at all. Whatever you are doing, keep doing it.” Abby tells her the vision therapy has been very helpful and asks her if she will write a letter to help her obtain funding for this service.
Today, we receive a letter from the doctor that reads, “It is my recommendation that Abigayle continue vision therapy due to her nystagmus and alternating exotropia, as it has proven to improve her ability to read and focus her eyes.”
As I reflect on my journey with Abby navigating Western medicine and a world designed for able bodies, I feel empowered. The empowerment that happens when we are given informed consent, time to align with the intelligence in our bodies, and the opportunity to truly consider the decisions that will impact our lives. I imagine as more of us have this awareness of points explored in this blog, we may have fewer syndromes of all sorts.