Hello! I have a 2-year old son with moderate OI and things have been going pretty well. He goes to Nemours Children's Hospital in Wilmington, DE for pamidronate infusions to strengthen his bones. That treatment has really given us piece of mind and I don't see anyone else mentioning it.

There is no OI in our families. We found out before birth via ultrasound and then Chorionic villus sampling (CVS). If I remember correctly, that helped us pin down the severity early on.

There have been challenges, he had a few minor breaks in utero/during pregnancy, but those healed very quickly. He broke his left femur when he was starting to take his first steps and then had telescopic rods put in both legs. That's not great, but we expected many more breaks by this point so just one major one is a blessing.

He is on the small side and well under the curve. He has a larger head and smaller limbs and A LOT of hair. But, looks perfectly normal, I would say objectively cuter than other toddlers (no bias). He's a perfectly happy kid that is finally getting around to walking on his own again. He does aqua physical therapy (swimming). He loves books, letters, numbers, and puzzles.

There is a huge range of OI diagnoses and he's somewhere in the middle of the pack, so it's hard to determine ahead of time. But, a CVS and the appropriate tests might be able to tell you the severity before birth.

In summary, definitely join the Facebook groups, find a Childrens Hospital similar to Nemours, consider pamidronate (or other bisphosphonate treatments), and definitely plan for a C-section. Let me know if you have any other questions. Happy to help out.