I am not a medical professional. I do not have any medical training. I am the mother of a little girl who has been diagnosed with Aniridia, Wilms Tumor, and Kidney Failure. I am writing about my experiences. I am not always going to be accurate with details, but I try to be as accurate as possible. Please do not use this information to diagnose or treat yourself or anyone else. Please consult with a trained medical professional for any treatment or diagnosis.
Thursday, March 25, 2010
Our daughter, Piper, was born on March 2, 2010. The pediatricians at the hospital informed us that Piper did not have much visible iris. They were concerned, and they wanted us to see a pediatric opthalmologist. Our appointment was scheduled for March 8. Piper was 6 days old. The opthalmologist told us that Piper had sporadic aniridia. He went on to explain so many details. It was all a bit overwhelming. We left the appointment not knowing what to do next. Neither of us had ever heard of aniridia, and we had no idea what this really meant.
We were referred to Duke to see a pediatric opthalmologist (glaucoma specialist) and to start the ultrasounds. Piper will have to see the specialist at Duke every 3 months, and she'll have an ultrasound every 3 months for at least the first 5 years of her life.
We met the opthalmologist at Duke. She was very patient and informative. So far, Piper's eyes look good... no glaucoma. We also had the first ultrasound. We are still waiting for the results.
Other than the aniridia, Piper is very healthy. She is eating and sleeping well, and she is gaining weight. So, for now, we treat her just like any other healthy baby. We just try to keep bright lights and sunshine to a minimum.
Hopefully we'll receive the results from the ultrasound soon!
No matter what the outcome of any of the tests, we know that God has a very special plan for this very special little girl. We pray for her health and happiness. Today Piper is 23 days old, and we LOVE her so much!
Posted by Melissa at 10:24 AM