Two children sitting on the groundEDITORIALS

To have or not to have … children

I was seventeen the first time I attended an educational course about OI. It was primarily a course for adults of small children with OI, but Rebecca and I were nerdy enough to be interested in genetics, collagen and symptoms when we were 17, so we registered in any case. And it was at this course I had a memorable talk with one of the most famous geneticists in Norway of all times – Dr. Heiberg. And even if this is around 100 years ago, well at least 30, I still remember it quite vividly. After talking about this and that – the professor proclaimed: “Whatever you do in life young lady, make sure not to get pregnant!”

And I don’t know if this is the reason or not – but I have gone through life without really considering having children of my own. Perhaps because I was afraid I would not be able to care properly for a small child? Perhaps I was afraid of what a pregnancy would do to my body? Or perhaps I was afraid of having a child with OI? Not because that would be a disaster in itself, but because it would be even more difficult caring for a child who’s fracturing when you have a disability yourself. Or perhaps I didn’t really consider it because I didn’t find a man I would consider having children with until I was over 40. And then he happened to have OI himself. Same type as I have, only a different gene. Which leaves us with the odds of 75% chance of having a child with OI.

“Fortunately” I was so old when I met the man of my life, that I was no longer even theoretically considering children. Because of scoliosis, breathing, chronic pain, and other issues – I seriously thought it would be too hard on my body. And unlike the man of my life, I have never really had the urge to produce children of my own. Which is good, because the opposite would have made it so much harder.

I’m fine with borrowing our friend’s toddlers for a short while or playing games with the older ones for a couple of hours. But it’s not sometimes I miss regularly, to be honest. I have found other passions in life; like cultural experiences, good food and wine, friends and not to forget, my very own baby that I have adopted from Ute Wallentin – the OIFE!

And for me this is enough. I completely understand that other women (and men) with OI have different opinions, priorities and dreams and passions in their lives. I support those who choose to get pregnant without worrying about having a child with OI. And I support those who consider using one of the many options that are now existing, to check or secure that the child you are carrying does not have OI. Donor eggs, PDG, NIPT and much more. This OIFE Magazine is a special edition about pregnancy and reproduction. It covers various aspects from risks connected to pregnancy when you have OI or brittle bones, parental experiences and satisfaction with genetic counseling after receiving a prenatal diagnosis of OI, young OI-people’s knowledge about inheritance and Lida’s brilliant article about OI & reproduction. Check out the illustrations in particular! I have rarely seen such a complex topic being described in such a pedagogical way.

Written by Ingunn Westerheim, OIFE President

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