When Helping Hands Still Hurt – Part 2

Source: https://www.medicalmalpractice.ca/ontario-hospital-error-lawyers-overcrowding/

Trigger Warning: Medical Trauma

Yesterday we talked about medical trauma – what it is and why those with chronic illness and disability are (unsurprisingly) more susceptible to it than most.

Today I want to tell some stories of my own medical trauma, to help those of you who haven’t experienced this to start to wrap your head around what medical trauma might look and feel like and how that might impact someone, and to help break the silence for those who have experienced medical trauma as a patient or caregiver. I don’t tell this to hurt anyone or call anyone out. My parents and caregivers each did the best they could with the resources they had available to them at the time. But I still think that telling these stories is important, because it gives others the courage to acknowledge the impacts of their own experiences and also gives folks the opportunity and ability to think about what those in their care might need today to avoid these experiences moving forward.

Just a Babe … 

When I was a very, very little babe – less than two months of age – I developed intestinal bleeding and an extremely high fever. The doctor’s didn’t know what the cause of it was, so I was hospitalized in an isolette by myself. Long before hospitals understood the importance of touch to newborns, that meant I was deprived of human touch (apart from medical attention) for the three weeks I spent in the hospital. Because they didn’t know what was causing the bleeding, they provided me with IV fluids but took me off of breastmilk and then even formula to try to get the bleeding to stop. The whole picture was bad enough that my parents were told that the doctors had run out of options and that it would come down to whether my body could fight off the fever or not – there was nothing left that they could do.

Although I survived that experience, it left scars. For years and years and years I would panic if I didn’t know what the plan was for my meals, and I need a lot more human touch to feel calm and safe than most people I know. I suspect I could have actually recovered just fine from this if it had been the only experience I had of medical trauma, but it was not …

Infected Pin

When I was just four months old, I went back to hospital to have surgery on my foot (for the first of what would eventually be 11 times). The doctors placed a pin in my foot to hold it in the correct position, put a cast on me and eventually discharged me from the hospital. I don’t know exactly how it happened, but the foot became infected, and I was rushed back to the hospital by ambulance in the middle of the night. At the hospital, I am told that an intern pulled the pin out of my foot without waiting for the attending surgeon. The result was significant, life-long damage to the structure of my foot, causing daily pain and necessitating the rest of my operations in a varied attempt to ‘fix’ a foot that never quite worked out.

Earliest Memories …

My earliest memories are from a hospital stay when I was just three years’ old. In the days before parents had 24/7 access to their children in hospital, there were very strict visiting hour policies, and so children’s wards were completely dependent on the nurses and other staff to care for their needs. I can remember being sat in a ‘banana cart’ – a tall, child-sized gurney that put the child at about adult waist height and had a metal half circle of support around the back half of it. I remember being out in the hall with the other children, gathered around the nurses’ station as we all waited for our parents to come visit. That was just the start of a hospital stay that included my foot becoming so swollen after surgery that they had to go in and cut off the cast to restore blood flow to my foot and replace the cast with a softer bandage and a drain. 

When I was seven I was back in the hospital the night before surgery, in a ward room with four other girls. I woke up to hear crying from across the room. A twelve-year-old who had suffered a severely broken leg from a ski accident had been unable to find her nurses’ buzzer and had wet herself. I remember at seven feeling responsible for looking after her, but barely able to find and remember how to use the buzzer I had myself, and finding I was completely ‘trapped’ in the bed by the bars and rails designed to keep us safe (back in the day when the children’s beds at Sick Kids were more like cribs than today’s hospital beds). 

I remember days and weeks and months and years of my life significantly fatigued and in pain – always frightened that someone would jostle my foot and send me into excruciating agony. Knowing that to say yes to the activities on the playground or to participate in gym class would both expose me to the ridicule of my classmates – as I had neither balance, co-ordination, endurance or the skill to physically compete at their level – and leave me without the physical capacity to walk home at the end of the school day. I can’t, in fact, remember a day when I came home without my foot throbbing and aching, but – not knowing there was an alternative – I rarely took painkillers.

Each of these experiences – and the dozens and dozens like them that set me apart from my peers and left me questioning whether I was safe, known and precious – were like little drops in the bucket of trauma. But nothing compared to what would happen next …

The Device

When I was thirteen and my growth plates had fused, my doctor decided to try an experimental procedure called the Ilizarov External Fixator on my foot. The bones in my foot and leg were broken in a number of positions and then the device was fitted over my foot and attached using eight pins that went in one side and out the other again. Over the coming three months it would be my job to use a wrench to turn the nuts on the bolts that would rebreak these bones four times a day, slowly shifting and changing the position of my foot. It was both exceptionally painful and incredibly debilitating.

The author at age 13 with the Ilizarov External Fixator on her foot, just a few days before the device was finally removed.

Despite promises that I would be able to walk on my leg within a few days of having the procedure, I was confined to bed and a wheelchair for most of the first three months, and then used a wheelchair and crutches for the next six months. What was supposed to be two surgeries turned into four. Nobody had prepared my parents for the level of care I would actually need – whether it was underwear that could velcro on and off at the side, pin sites that needed cleaned twice a day to prevent infection, daily physical therapy that was intense and painful, the fact that I wouldn’t be well enough to go to school for three months, or that I would need to re-learn how to walk just weeks before I started high school and would use a cane for years thereafter.

Most traumatic, however, were the five days I spent with continuous muscle spasms in my foot that came ever 2 – 3 minutes round the clock. I endured these without adequate pain relief and often on my own until someone finally realized what was happening. It turned out that the spasms were a result of the fascia in my foot failing to grow at the same speed as the bones. Doctors would eventually go in and make little ‘v-cuts’ in each of the tendons of my toes to release them, but the result of all of this was that I permanently lost 90% of the control over my toes, spent an extra three weeks’ in hospital (almost entirely on my own) and was left with significant trauma.

Parents Experience Trauma, Too

I think it’s important to finish this post by acknowledging that parents and other caregivers experience medical trauma, too. For me, those experiences included having a child born with hip dysplasia and having to find a way as a very young mom to travel back and forth to our major teaching hospital (an hour away) with a newborn when I was without a vehicle or anyone to drive me.

It included being told that the baby I was carrying had a chromosomal abnormality that would make it difficult for him to survive outside of the womb – and then carrying him to full term and spending time staring at him through the incubator glass when he was too fragile yet to hold. It included sitting with him in one of the busiest NICU’s in the country with 40 beds in one room filled with fluorescent lights that glared down on us 24/7 and alarms blaring in every direction, aware that those alarms each had the potential to mean that a baby was dying. It included going home with that babe in my arms and a partially filled in death certificate in my diaper bag for him. And eventually it meant burying that little babe.

It has also included years and years of advocating with paediatricians and family doctors, psychologists and psychiatrists for my kids needs – being told over and over again that they are ‘fine’ until that moment when the scales tip over and they say to me ‘why didn’t you bring this child in sooner???’

Why Share All This?

It’s a valid question. This isn’t the heart-warming, uplifting post you would typically expect to see during a week celebrating Persons with Disabilities, really. But after spending lots of time in therapy working through these experiences and the impacts of them in my life I am choosing to tell this story today for three reasons.

The first is that if you have been through something similar – some medical experience that left you feeling alone, uncared for, abandoned or like you could no longer trust the people around you – then you are not alone. This is what medical trauma does. And oftentimes that sense of isolation is added to by the feeling that we should be so pathetically grateful that we survived that we don’t ever feel like we have a right to be honest about these experiences. But medical trauma is real – even if you’ve never heard anyone else talk about it – and it happens far more often than anyone would like to admit.

The second reason is that if this story resonates with you I want you to know that there is value in reaching out and getting help to work through this experience. Whether you talk to me directly or find a therapist who specializes in Somatic Therapy and Trauma Informed Practice, the emotional impacts of your trauma do not have to define or constrain the rest of your life. There is hope for you.

And finally, I wanted to tell this story so that I can spend the rest of the week talking about what helps protect and heal our children – and ourselves – from this kind of trauma in the first place. That’s because as recently as 2014 when I spoke with a top psychiatrist at the Hospital for Sick Children about my experiences as a child and asked why there had been so little support for myself and my family at the time, I was told that the resources and awareness simply didn’t exist and still wasn’t available for families today, apart from those dealing with cancer and severe eating disorders. Which means that we need to start having these conversations as a society, as medical professionals, as parents and caregivers, and as patients, so that we can create a world where the supports take place appropriately and in a timely manner so that the experiences we have dealing with medical issues can be as positive as possible, both short term and long term, for everyone involved.

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