Written By: Bethany
I used to think OI wasn’t so bad.
To be fair, my Osteogenesis Imperfecta (aka “Brittle Bone Disease”) is extremely minor. My genetic condition was a spontaneous mutation not found elsewhere in my family, so I was not diagnosed until I broke a leg when I started walking.
From there, I broke sporadically throughout my childhood, but always healed well and quickly. My parents allowed me to set my own limitations and decide for myself what activities were worth risking a break.
Due to being a spontaneous and minor case, I was never connected to the OI community. I never met anyone else with my disease, or even knew what more severe forms were like. I saw it often represented in medical shows, and even the movie “Unbreakable,” but these fictional portrayals seemed foreign to me.
That meant I grew up a bit of a daredevil. Broke three fingers at once on a trampoline, mangled a wrist making ice slides during recess, and even broke a leg jumping over the dog the night before my brother was born. (Maybe I needed one last night to be the center of attention?)
But in 2012, I was in a life-altering car accident. An 80-year-old man with Parkinson’s and dementia drove his car right in front of mine, leaving me nowhere to go at 40 miles an hour. I slammed on the brakes, so my right heel absorbed the force of the impact and shattered. It would never fully recover. My airbag went off and slammed my left arm into the side window, shattering both my radius and ulna.
Having broken so many bones in the past, I thought I knew what to expect. But this was something else entirely. My foot could not be fixed for two weeks due to swelling, so I lived with the agony of bone pieces grinding against each other inside of my heel. While I had once been a crutching pro, I now found myself wheelchair-bound, with only one working hand. No pain drug dose was high enough to relieve the agony.
They told me these were bones that would have been expected to break in an accident of this kind, but I began to wonder… would my bones have shattered THIS badly, if not for my OI? For the first time ever, I genuinely wondered if my OI was making me suffer more pain than others would have in my place.
And that left my husband and I with a question… could and should we pass this on? We had never wanted many biological kids (we prefer to adopt from foster care), but should we have any? I’d had genetic testing and knew any biological kids had a 50% chance of inheriting my disease. Could I handle watching my child suffer as I had, wondering if it was my fault?
We wrestled with that question, and eventually decided to move forward with one biological child.
As the pregnancy progressed, we decided to do amniocentesis to test our baby girl and find out if she inherited the disease. Terminating the pregnancy wasn’t an option for us, but we wanted to know as soon as possible whether we needed to do anything special to protect our little girl. Things had been going so well that I became hopeful and convinced myself she was OI-free.
I was devastated. I felt so guilty, as though I had somehow done this to her. I was overwhelmed thinking of the broken bones that were in her future, and wondered if she would someday resent me. Despite having traveled the world, remained active, and generally not allowed my minor OI to limit me, I worried that perhaps she would feel I had limited her life. I joined OI groups on Facebook for the first time ever and my eyes opened to scores of possible OI complications I had never imagined.
OI often makes babies be breech (about 40% of the time), and our daughter was no exception. She was born by scheduled C-section, delivered by an OB-GYN who was openly fearful about the potential of breaking one of her bones during delivery.
As it turned out, our daughter was delivered with bowed femurs, but otherwise intact. Her first pediatric ortho visit was at only four days old. Family and friends visited us at home, some visibly terrified of her OI. Despite having nothing visibly wrong with her except for some rounded thighs, she was already being treated differently. My heart hurt.
The orthopedic doctor diagnosed our baby with developmental hip dysplasia, in addition to her OI. The doctor’s visits continued. As we waited in the exam room on the second visit, I heard a child in the next room. The child was screaming, due to (I assume) an injury of some kind. I don’t know how old the child was, or what happened, but I felt like I was getting a glimpse into the future. Someday that would be my child, in this very office, screaming in pain. I looked at my (contentedly sleeping) baby and started to cry.
That night, I put my daughter into her nightly hip harness for the first time. She fought it and cried. I thought of all of the various contraptions and casts I will have to help strap my baby into down the road, and I cried.
During the day, I watch our baby girl who pushes herself to attempt an early crawl, who tries to stand whenever we hold her against our chest. I cheer her on and marvel at how much faster she is advancing than I ever did. But at night, I have nightmares of her crawling before I am ready and falling down the steps. I am constantly making sure no papers are left on the floor, because slipping on an envelope was how I broke my first bone. My daughter’s powerful motivation to crawl and walk terrifies me, but I smile at her and cheer her on anyway.
So as it turns out, OI is that bad. Even when it is extremely minor for the child, someone else has to watch that pain. Someone has to dry the tears, anticipate the next ones, hold a screaming child on the x-ray table, and bite their tongue when their breakable child chooses to be brave and live a full life anyway.
I know now that my baby girl’s OI journey is going to be so much harder for me than my own ever was. But I am thankful for my tiny little chatterbox who pushes herself to meet her physical milestones, even as I see her hurtling toward that first fall. I will be there to cheer for her, and I will be there to pick her up when she falls. I can’t stop her OI, but I can stop her from living in fear of it.