Living a Full Life with Osteogenesis Imperfecta: Adira's Story - Nemours Blog


Living a Full Life with Osteogenesis Imperfecta: Adira’s Story

Contributed by Adira’s mom Ashley.

The first inkling that something wasn’t right came at my first ultrasound. My baby’s femur was bent at a 90-degree angle when it was supposed to be straight. A subsequent ultrasound showed fractures in her skull and irregular shaped ribs.  I was referred to a large prenatal referral center for an amniocentesis that confirmed a diagnosis of Osteogenesis Imperfecta (OI).  Consultations with the prenatal group suggested that this form of OI was very severe and incompatible with life.  

I was devastated and searched the internet to find help. Miraculously, I connected with a mother who had been in a similar situation.  She referred me to the Osteogenesis Imperfecta Program at Nemours Children’s Hospital, Delaware.  We met the entire OI team the same day and geneticist, Dr. Michael Bober told us, “I promise you that we will do everything we can for your baby.” 

Additional testing indicated that I could deliver through their onsite Advanced Delivery Program, so that my baby could get the highly specialized and immediate care she would need.  

Adira, was born with Type III OI, a condition while medically challenging at times, is one in which she can live a full life.

Now, at 2 years old, Adira is doing great!  She is age-appropriately smart, loves to read and is exceptionally curious.  Although her gross motor skills are delayed, Adira is developing her own sense of independence– scooting around the house to get to where she wants to go.

Most importantly, she’s happy, quick with a smile and just a regular kid who happens to have OI.

To learn more about our Osteogenesis Imperfecta Program, click here.

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