Wednesday, May 13, 2009

From the Begining

Carrah was born in October of 2008 at a healthy 7lbs 4oz with the whitest hair I had ever seen on a baby. Everyone commented on it, even the nurses, because they had "never seen a newborn with such white hair" I sort of shrugged it off because even though my older daughter Cami was born with black hair, myself and my husband had white hair when we were kids.

When Carrah was around 4 weeks old, I started noticing little things that bothered me about her eyes and I brought my concerns up to my family, who told me I was a worry wart. Everyone told me to wait until she was 3-6months old to tell for sure if something was wrong, so I tried to let it go. But around 7 weeks of age, she would not look at me. I would get right in her face and she would never look into my eyes! I thought she was blind. My heart ached, my stomach was in knots because I was terrified that my beautiful new baby would not be able to see not only the world, but me, her moma! She wouldn't track objects, like toys and her eyes would "bounce"{as I called it} back and forth over and over again. I later learned this is called "Nystagmus."

When I took her in for her 2 month check up, the nurse practitioner told me nothing was wrong. "Oh her eyes just haven't focused yet. Wait a little while longer." I was NOT happy with her response. A couple weeks later, my daughter Cami was sick, so we saw our regular pediatrician. While I was there, I asked her to look at Carrah's eyes and she said "Hmm..something just isn't right is it? She won't focus on anything." Thank goodness, I thought. Someone is finally listening to me!! She set me up an appointment with an Optometrist.

We saw him and as soon as I walked in the door he said "Does Albinism run in your family?" Um..what? I thought, but then I managed to say "No. I've never seen anyone with Albinsim." (The reason I knew what this was, was because my mom and I had been fervently searching online for what may be wrong with Carrah and Albinism had come up. My mom said "No, she can't have that because her eyes aren't pink" and I agreed, so we left it at that.) He said "let's do some tests." so we sat there while he did all sorts of tests on Carrah's eyes. The conclusion was "Ocular Albinism and maybe Optic Nerve Hypoplasia" We were then referred to Opthamologist at Children's.

Went to the Opthamologist in February when Carrah was almost four months old. They did more tests. The diagnosis was "Oculocutaneous Albinism" with NO Optic Nerve Hypoplasia (thank you God!) The other eye doctor thought she may have ONH because he couldn't see the Optic Nerve behind the eye, the reason he couldn't see them was because she has almost no pigmentation behind her eyes, making it hard to see the nerves. While at Chldren's, the Opthamologist had two other doctors come in for a consult on Carrah because it is so rare. The other two had never seen an Albinism case at that hospital.

So there you have it. We must now keep hats, sunglasses, and sunscreen on our beautiful little CareBear. Her skin and eyes are extremely sensitive to the sun! It must be taking very seriously.

Moral of the story: TRUST your MOMMY INSTINCTS!! I knew something was not right with my baby girl when no one else believed me. Thank the Lord it was nothing life threatening, but I'm so thankful we found out as soon as possible.

Now I'm in the process of finding Early Intervention classes, many many UV protected products, as well as other things.

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