When I began to write a article about motherhood, being a mother with Osteogenesis Imperfecta (OI), I had to take a long pause. I have taken many pauses in my life, but this one proved different. Since I’ve never been a mother without OI, I had to try to imagine the differences between being a OI mother and an able bodied one. In some ways the differences are very minor, but in others it’s quite profound. The decision to raise a family for anyone with a hereditary genetic disorder is one fraught with questions which I had to ask myself years ago when I became a mother for the first time. What are the odds I will pass on my defective gene? What if my child is in fact, born with OI? Will my child’s OI be the same as mine? What are the heath issues I’ll face during pregnancy? And countless others. To a degree I believe all women thinking of raising a family have apprehensions, fears, and questions, but for a woman with OI there are additional layers of concerns that must be addressed. However, when my journey of motherhood began, I had not yet taken this pause. This journey for me began at age eighteen. I had barley finished high school when I fell in love with my now husband. It was a whirlwind romance centered around, friends, fun, and planning our future. I had never considered that this future may include a child, or children for that matter. Oddly enough, I had never even entertained the idea of becoming a mother one day. In fact I had never even held a baby before. Nevertheless, as fate would have it, before I had even sent in my college application to the local University I became pregnant with my first child. Upon learning I was pregnant, terror swept over me. I was fearful for my future and unsure of how it would effect my relationships with my loved ones. What would my parents say? How would my boyfriend react? My life was in upheaval, even before considering how being disabled with OI would factor in. Needless to say it was much to my relief when I received full support from my boyfriend, friends, and family. Now it came time for me to take that first pause, asking myself the “additional layer” of questions that most prospective mothers don’t have to find answers to. I was fourteen weeks pregnant and had just been told “it’s a boy!” when I attended my first appointment with a Geneticist for pregnancy counseling. I had never visited a genetic specialist in spite of being diagnosed with a OI myself at three months of age. I was unsure of what to expect but looked forward to the professional insight. Shortly after my arrival the physician looked me over, evaluating the severity of my OI, concluding that carrying a child was possible based on my medical history, size, and deformities. The Dr. also wasted no time enlightening me to the fact my child had a 50/50 shot of inheriting OI. It was quite a revelation to hear spoken, yet I didn’t even blink in reaction. Perhaps I was eased by the obliteration of my denial–or numb. Either way I was momentarily at peace—peace that was quickly shattered by the suggestion of abortion. I was shocked and admittedly offended, quickly replying with a “No” and a look of “How dare you.” before leaving the office in a huff. It was almost immediately after this encounter when reality set in. In that moment I was no longer wondering if my child would grow up to be quirky like Aunt Lisa, or share his fathers birthmark—instead loomed the possibility of inheriting a brittle bone disorder that would effect every aspect of his life. My pregnancy progressed fairly normally in the beginning, with morning sickness and unusual cravings galore. Although I was haunted by possibility my son would be born with OI, I tried not to worry about something which I could not change the outcome. I had discussed the obvious risks with my obstetrician from the get go. Due to having a shortened torso, I was made aware of potential complications such as trouble breathing for myself, as well as premature birth. I also knew I would require a caesarian section since a normal delivery would most certainly shatter my pelvis. The baby could also potentially kick and break my ribs. Still, I took the the approach of crossing bridges when I came to them and carried on life as normally as I could. Not to say that there weren’t a few unexpected difficulties however. By my fifth month of pregnancy, I began having difficulty maintaining my weight due to the fact my stomach was compressed, and had the sensation of fullness after only eating a couple bites. I also became extremely anemic and was exhausted much of the time. Additionally I had an irritable uterus, and was hospitalized to evaluate for pre term labor on more than one occasion. As nerve wrecking as it all was, I managed to keep focused on the light at the end of the tunnel. Luckily a friend of the family provided me with information from the Osteogenesis Imperfecta Foundation regarding pregnancy statistics of OI women, through which I found some solace. This newfound information told me I wasn’t the only one, and it could be done. At 37 weeks gestation I checked into Women and Children’s Hospital for my scheduled c-section. It had all come down to this. The questions had been asked, some had been answered, some had not, yet at this moment none of them mattered. I cried the whole way to the OR, and I wasn’t quite sure what I was afraid of, but I was. I opted to receive spinal anesthesia rather than general anesthesia (being put to sleep), since it was the safer option for the baby. I knew there was a chance the spinal anesthesia wouldn’t work properly due to the fact I have scoliosis, and there was a risk of complications such as spinal damage, but it was a risk worth taking. Fortunately I was soon rightly numb from the waste down, slathered in Betadine, and hooked up to all the proper monitors. Less than twenty minutes later, my new son Luke made his grand entrance– none too thrilled and wailing. At six pounds even, he was healthy, and checked head to toe for any sign of OI. He was given a tentative “all clear” and was released from the hospital at two days old, even though I had to stay a week. Arriving home was yet another daunting milestone I had not prepared for. How will I carry the baby considering I use a wheelchair? How will I transport him on outings? What if he does have OI after all, and I break him changing his diaper? But I soon realized these questions answered themselves. I learned babies have an unbelievable grip, and hold on very well when being “wheeled around” on short trips. The Snugglie carrier was also a lifesaver. I also could form a cradle of sorts on my lap and wheel around with him sleeping on my legs. While my mother was nervous to say the least about a wheelchair user caring for an infant, her concerns quickly dissipated. I am also happy to say, I never “broke” Luke changing his diaper–in fact he never has broken at all. As of today he is a happy, rough and tumble, OI free little boy. As for my future, as my own person and as a mother, was enriched more than I could imagine. I was soon married and attended college the following spring after Luke was born. While I had to make a lot of changes in my life, like finding a suitable apartment for all of us that was accessible, and learning to be very proficient in chasing a toddler in my wheelchair, it was all well worth it. While women with OI or any disability, have many hurdles to overcome raising a family the rewards are just as great as any parent. That I believe this is the most important thing to remember as you consider the challenge of raising children.As a disabled woman and mother I have learned to take the questions that come in stride and seek their answers enthusiastically, rather than fear them. I relish the opportunity to take on new challenges, even though at times they can be frustrating. Ultimately, motherhood is one challenge within a
challenge which I am thankful I had the opportunity to take on. What do you think of motherhood as a person with a physical disability? Email us at firstname.lastname@example.org .