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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Thursday, March 25, 2010

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!

2 comments:

  1. Hi Melissa
    Your daughter is an angel.Hope she is doing well.
    My son was born on March 26/2010. After having wandering eyes and problems with focussing we found out that he has aniridia and nystagmus.We are waiting for an appt at sick kids Hosp for the other tests to be done.I did research and was very happy to see an artfical implant surgery for aniridia.And if eveything goes well I will be looking forward to get this done for my son.Well i think the waiting period is 5 yrs bt m ok with that.I m scared of Wilms tumor coz it reduces the bridge of living once comes in the body.I just pray god none of the babies suffering frm aniridia should get WT.One of my Frds daugheter has aniridia (Sporadic).She is 2.5 yrs nw and doing alrt with no WT.She is also waiting to get surgery done when she turns 5.
    I m looking forward to be in touch with u, so that we can support each other .Mi email is suchita_sethi08@hotmail.com.
    Sorry for the long story.
    Regards suchita

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  2. Hello,

    I have a son born February 16/2010 an has sporadic aniridia and nystagmus. We did genetic testings and there's no deletion so they told us there is no chance of Wilms. Why do you still checking kidney's? I am very worried for his future vision and like to be in contact with parents.

    Best wishes to everyone,
    my e-mail is: lana.jelacic@gmail.com

    Lana

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