As a person with Osteogenesis Imperfecta, I want to target this post towards parents of the newly diagnosed. I feel like myearly life was a bit of a case study in both ways to nurture a child with OI as well as contribute to the unhealthiness of the same person. I don’t blame my parents for the way I was brought up because I was a first-generation person with OI, and they didn’t have the ready access to resources that the internet has brought. I encourage you to make use of the OI Foundation website and find a support group as a first step toward adjusting to the new normal both you and your child or children will experience. Now for my tips:
1) Do not instill fear in your child about the future. My parents did not set out to make me fearful, but the overemphasis on extreme caution I grew up with made me feel very fearful. Almost all of my bone breaks came when I was participating in everyday activities, not in the odd moment I would run a few steps or roughhouse with my little brother. (Case in point: I broke the side of my foot walking…yes, walking….down the hall at school. My ankle rolled a little and I stepped on the side of my foot and it broke about an inch below the pinkie toe. I was 12.)
2) Do not talk about your child’s condition in front of them to other people while relating details of the condition that you have never talked over with them. Several times I heard my parents talking to other people about how I couldn’t have children because I have Osteogenesis Imperfecta, and not only is that pointedly untrue – women with the more severe types of OI (which I don’t have) and short stature (which I don’t have) have children frequently (they are usually featured in the news because of the interest in a small woman giving birth to a baby).
OI can lead to a much more high-risk pregnancy, but it isn’t a death sentence. Their talking about this with other people was completely inappropriate because of the nature of the conversations, and even more inappropriate because I was never sat down and talked with about these things. Apparently, my specialist related several possibilities about OI to them all at once when I was diagnosed at age 8. This was obviously before I grew and before one could see how my Type IV OI would present.
3) Encourage activity. I was always told swimming was a great activity for people with OI because it was a non-impacting form of exercise. We didn’t have a swimming pool and couldn’t afford one. My parents never really made an effort to inquire about other appropriate forms of exercise for me, and we weren’t active as a family. As I started to gain weight in adolescence, I was merely encouraged to diet (which would have been impossible to manage in my household in the first place) as a way to get healthy. A better alternative would have been to go out for a family walk at the end of the day, etc. If your child’s physical capabilities are severely limited, they may be able to do very little, but there is likely some form of activity that can keep them as healthy as possible.
4) Gradually turn over their medical information to them. My ability to visit an OI specialist was cut off at age 14, so my parents only had the vague perceptions of what life with OI would mean to me in their heads as I got older. As stated above, most of these were told to them when I was eight and the doctor’s really had no idea exactly how my condition would treat me. Disclosure would have been wonderful as well as a gradual tapering into making all of my own healthcare decisions by age 18.
Keep your kids as active as possible and put them in the driver’s seat when it comes to their healthcare choices as age appropriate. It will make their life better and create a feeling of empowerment with OI where one might not naturally exist.