Bringing Up Brooke: Raising a Daughter with Dwarfism

No More Denial

Prior to the visit, Dr. Pauli's office sent me a lot of very straightforward literature that outlined all the medical facts about achondroplasia. Now I had to face the truth head-on. Shock and denial slipped away as I looked through all that information in front of me. I felt an enormous sense of relief. For the next few weeks, I spent my free time reading everything I could find on achondroplasia at the library and on the Internet. I found the Website for the Little People of America, a support group for people affected by different forms of dwarfism, and connected with other parents from all over the country. Dr. Pauli's office put me in touch with a nearby family whose 2-year-old son had achondroplasia, and I took Brooke to meet him. I was reassured to see that he was a healthy, cute, bright little boy.

Finally, the long-awaited visit with Dr. Pauli arrived. After a lengthy examination, he told me that Brooke's foramen magnum -- the small opening at the back of the skull for the brain stem -- was smaller than normal. He wanted Brooke to have an MRI immediately to see if her skull was "nicking" the brain stem and spinal cord, which could cause serious neurological damage. We discussed the possibility of decompression surgery, an operation to ease the pressure on Brooke's brain stem and spinal cord; in the meantime, I needed to watch for signs of neurological injury, such as seizure, and keep Brooke's head from moving around too much. Needless to say, this was frightening news. I was also referred to the local Easter Seals chapter, where Brooke started getting.

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