Hanan's Story: Parent's Letter Project Achondroplasia (dwarfism)- Hanan's mom

Every child is unique and perhaps every parent worries, especially with a visible difference such as dwarfism. From the beginning, the Genetics team at Children's National coordinated Hanan’s care with Orthopaedics, and Ear, Nose, and Throat (Otolaryngology). This has worked out well.

Now, aged almost 4 years, my daughter attends a preschool with her peers and is happy and well adjusted. She was slower to walk than most but is catching up quickly in motor areas. I was very concerned when I learned shortly before her birth that she was a little person; but I found with a sense of humor and the great multidisciplinary approach at Children's National, my daughter's condition was the least important aspect of her life.

It was important to be aware of the possible complications since spine abnormalities in some children require surgery in early life. Hanan needed a laminectomy at 4 months of age, she recovered with amazing speed, spending only three days in the hospital. The day of that surgery was, of course, nerve-wracking for us, but she was in the best hands, and her pain was well-managed.

Like many children with this condition, she required ear tubes as an outpatient and for the first two years of her life we had many doctor visits. But our quality of life (and more importantly, hers) has improved steadily.

She still attends occasional physical therapy. We've enjoyed the contact with other families that include little people, and in the era of the internet, it's easy to reach them. Among the many great practitioners, Kenneth Rosenbaum, MD, of Genetics, Laura Tosi, MD, of Orthopaedics, and Rahul Shah, MD, of Otolaryngology deserve special mention. I will never forget John Myseros, MD, of Neurosurgery either, as his operation was life-saving.

All in all, Hanan has been a joy and I think coping with challenges may make her even stronger. I know I am wiser, having met extraordinary people on this journey. I think you will too.

Sincerely,

Hanan's mom, Sholey

Treatment Team

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