Please Note

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.

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Friday, December 17, 2010

9 Months

Piper is now 9 months old!  This year is going so fast!!!  She is getting so big, and WOW, she is busy!  She is crawling everywhere, and she is trying so hard to stand up!

We visited the pediatrician for her 9 month check up.  She is doing very well!  She weighed 18 lbs. 13 oz., and she is 28 1/4" tall! 

We also had her 9 month ultrasound.  We received the call a few days ago that the results were good! 

I am so happy to report that all is well for Piper!  Our next appointment is in February.  We visit the eye doctor at Duke.  We were told that we will probably have to get her prescription for her first pair of eyeglasses then.  She continues to wear the eye patch every day for 2 hours.

We learned something interesting!  The eye patches were causing a lot of irritation on her cheek and around her eye.  The Dr. recommended rubbing milk of magnesia around the area before putting the patch on.  It worked!  When we remove the patch, her skin is no where near as irritated!  Yeah!

We're preparing to celebrate Piper's first Christmas!  We're very excited!  Hopefully, we'll have lots of good things to post soon!!!

Merry Christmas to all!

Tuesday, September 14, 2010

6 Months Old

Piper is now 6 months old!  She is getting so big!  She is a VERY happy baby.  At her 6 month pediatric appointment she weighed 16.7 pounds and was 26 inches long.  She is very healthy overall!

The past few months have been going well.  We have had to patch her left eye each day for 2 waking hours.  She really doesn't like the patches, but she handles it well.  She's also getting big enough to start wearing her sunglasses!!!  This is a big relief to me because it allows us to be outside in the sun more!

Piper had her 6 month ultrasound a week or so ago.  We are still waiting for the results.  Hopefully no news is good news.  The pediatrician should be calling in the next day or so. ....  so we're waiting patiently.

She had her 6 month appointment with the ophthalmologist yesterday.  Things went very well!  They originally thought her nearsightedness was a lot worse.  They were trying to get her prescription, and they realized it's not as bad as they thought!  She does not have to get glasses .... yet.  Also, the cataract on her right eye is not getting any worse, so we don't have to talk about surgery yet either!  We still have to patch her left eye each day to make her right eye stronger.  We have some pretty patches, though.  We have pink ones, ones with hearts, and ones with butterflies!  We have to go back to the ophthalmologist in November.

So, for now, we enjoy watching her grow and learn.  She is rolling all over the place, and she is really getting strong.  She smiles and laughs a lot!

Wednesday, April 7, 2010

Piper's Ultrasound Results

We finally received the results from Piper's ultrasound last week.  There are no tumors at this time.  We are so happy to receive this news.  We go back to Duke in June for the next round of tests.

Thursday, March 25, 2010

Purpose of this Blog

The purpose of this blog is to help myself as well as others to understand aniridia. This is a very rare condition, and most people have never heard of it. Hopefully, through posts, comments and links we can all gain a better understanding of what aniridia is.

Here is what I've learned so far ......

Aniridia - congenital absence or partial absence of the iris. ( However, aniridia is more than just being born without an iris. (See below : Other issues with aniridia.)

How Common is Aniridia? - Aniridia occurs between 1 in 50,000 to 1 in 100,000.

What Causes Aniridia? - The genetic defect has been found to be a deletion of chromosome 11. It is believed that aniridia is not caused by anything that a parent does or does not do.

Other Issues With Aniridia - Aniridics may have any of the following issues, in addition to having no iris.

  • Wilms Tumor
  • Cataract
  • Glaucoma
  • Lens Dislocation
  • Nystagmus
  • Corneal Pannus
  • Foveal Dysplasia
  • Optic Nerve Hypoplasia

For more information on any of the above mentioned conditions, I recommend reviewing the Aniridia Foundation International website :

Treatments - We have not been advised of any specific treatments yet. I have learned that aniridics should wear sunglasses or have their eyes shaded from the sun. Aniridics must keep a regular schedule of appointments with opthalmologists. They must also receive an ultrasound of the abdomen for the first 5 or so years of life to be sure the Wilms Tumor has not developed.

Useful Links :

Aniridia Foundation International -

Aniridia Network -

Piper's Diagnosis

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!