Who is Lilly?

I found out I was pregnant in October 2010. It was very unexpected and we were nervous but quickly became excited. I had my first ultrasound at 18 weeks and found out we were having a baby girl. Everything looked great as far as I knew. She was measuring slightly small but nothing of concern. We aren’t exactly the tallest people. As time went on I started to have some problems so my doctor gave me another ultrasound around 29 weeks. The tech, who is actually a friend of mine, thought that her legs looked a little bowed. I even noticed and asked about it. She got another tech and the doctor and they said that they probably were, it wasn’t just the angle. My OB sent me to Pittsburgh to a high risk doctor to get a second opinion. I went to that office and a tech and 2 doctors scanned me separately. They said everything looks fine and they had no idea why I was there. It was even mentioned, “The doctor was probably thinking the baby has skeletal dysplasia but your baby definitely does not. You have nothing to worry about.” Okay, they are the specialists so I believed it.

On May 2, 2011 I woke up at 5:30am and my water broke 6 weeks early. Lilly entered the world at 11:51am weighing 4lb3oz and 17 inches long. We spent 10 days in the hospital for her to grow. Otherwise we thought we had a healthy baby. At her first pediatrician visit after discharge, her leg was swollen. They sent me for x-rays which revealed a broken femur. I was then sent to Children’s in Pittsburgh. They discovered a skull fracture also that was probably from birth. They decided to admit her to the NICU. After 4 days and seeing what felt like every specialist in the hospital, they diagnosed her with OI and sent away blood work for confirmation. On July 5, 2011 it was confirmed that she has OI, specifically type IV. The “specialists” were completely wrong.

You’re probably wondering how she got OI. My grandmother’s brother, his son, and her sister all have OI. This led the geneticist to determine that my grandma, my mom, and I must have OI too. I got blood work taken and sure enough, I have OI. I have only broken one bone due to a sports injury. We can only hope that Lilly is as mild as I am.


Lilly currently gets pamidronate infusions every 2 months and is seen by a wonderful group of doctors in Omaha every year. We are still working on a good local ortho doctor in case of emergency. We are currently seeing one at CHP but that will be ending as soon as insurance companies decide to cooperate.