From the moment I found out I was pregnant with Noah, our youngest, I had this feeling that something was different.  I don’t know how to explain it.  It wasn’t really a bad feeling, although it was so different from my first pregnancy that I did sometimes worry.  I was trying not to be a pessimist and didn’t talk about it, except with my husband who never dared to agree with my concerns.  I later found out that he had been feeling the same way!

I had a wonderful, terrible, natural birth with the help of pitocin. See, I have this problem where my water breaks, but I don’t dilate.  It’s not fun, especially for someone who values completely natural childbirth.  Eight hours later and little Noah made his arrival without complication.  He was perfect and I felt so relieved!

When Noah was about 3 months old, we noticed he wasn’t focusing on objects and his eyes were “dancing” back and forth. The pediatrician recommended we see an ophthalmologist at Texas Children’s Hospital in Houston. I began researching his “dancing eyes” and found out that it is called nystagmus. The causes of nystagmus range from cataracts to optic nerve disease, but I recall seeing albinism and wondering… Could our son really have albinism?

Noah at one day old.

Looking back, it seems so obvious! Haha! He was born with long blonde hair. So long and blonde, in fact, all the nurses in Labor & Delivery came to see him. I remember a few half-hearted remarks or jokes about him being “albino.” It was quickly dismissed because he didn’t have “red eyes.” His big sister was born with long black hair, but grew into a blonde fair-complected toddler so it seemed possible to us that he have blonde hair and blue eyes. It wasn’t unheard of in our family. Everyone had a story about their cousin or uncle who was born with platinum hair. In the next few months, we would get so many comments and little old ladies coming over to peer at him in his sling at the grocery store. They’d say, “I’ve never seen so much blonde hair!” To us, he was our little rockstar. I considered his unique looks a gift from God… just another way that God was showing his favor to us.

We saw the ophthalmologist at Texas Children’s in November 2011 when he was 5 months old. He confirmed that Noah did have albinism. Only 1 in 17,000 Americans have albinism!  I was shocked actually, but mostly concerned for what that meant for him in the future. The doctor explained that his sight was still developing, but once developed could range from “pretty good” to legally blind. I came home with very little information about albinism or what to expect. I found The National Organization for Albinism and Hypopigmentation, or NOAH. (Awesome coincidence, right?) The people there were very helpful. My immediate reaction was to do something… like… “What do I doooo?!” They explained the only thing that I could do is keep his skin and eyes protected from the sun.

  • I learned about photophobia – or sensitivity to bright light and the reason he closed his eyes and hid his head outside during the day. This is a result of the iris (the colored area in the center of the eye) having little pigment to screen light coming into the eye.
  • I learned that albinism is a lack of the pigment melanin – which not only means he has fair hair, skin, and eyes, but that he will burn very easily in the sun without pigment to block ultraviolet radiation.
  • I learned about genetics – both my husband and I had to have a recessive gene for albinism in order for Noah to have albinism, and furthermore, the statistic is that one in four of our children could have it.

A year and a half later (or a week ago) my husband and I were at a conference. We knew the worship band had a guitar player that had albinism. I found myself holding back tears during the worship. This man was talented, had a beautiful family, and was serving God. He was an example and a hope. We had the privilege of meeting him and talking albinism with him. He offered his phone number and help with any questions we might have. He was a great blessing.

A few days later Noah had a check-up with the ophthalmologist (we went to Baylor College of Medicine this time due to a reference). He informed us that Noah’s sight is normal for his age. Of course, he still has trouble focusing because of nystagmus and has photosensitivity, but his actual visual acuity is normal. He also explained that his condition is not degenerative and that his nystagmus should improve with age. Good news!

Noah at 1 1/2 year old.

I knew that he was going to be different… I just didn’t know it was going to be a wonderful kind of different.  He’s still my little rockstar. And I absolutely know that he is a gift from God. I’m excited to see what God is going to do in his life.  Our prayer, since he was diagnosed, has been that his sight be functional, but his vision great. We are well on our way to this prayer being answered! Would you join us is in continuing to pray this over our son?

The Ugly Truth

You may be wondering how I feel about all this? I feel fine! Blessed, even! We really don’t even consider it an issue. I had a friend say to me once that we were the perfect people to have a child with albinism… that she would have a hard time with it. That doesn’t even register for me… so I guess she was right! The hardest part so far is that people are curious and ignorant about albinism. Around here, after saying, “He has albinism,” you have to explain by saying “… He’s albino.” Most of the time that does the trick, but some people still don’t even know what it means, or they think it’s not true because he doesn’t have pink eyes or because he is caucasian. Kids point out his dancing eyes and think they are funny. I don’t get upset about it, there was a time that I didn’t know anything about albinism either.

Honestly, one of the hardest things is that he has a hard time looking me straight in the eyes. Sometimes though, late at night, when he has woken up and needs comforting, I’ll lay beside him. And sometime his eyes are relaxed and still and he takes advantage of looking at my eyes. I cherish those moments.

6 thoughts on “1 in 17,000

  1. Thanks for sharing this link with me! We had a really similar experience when my son was born. He drew all the nurses with his white hair but it took 3 months for him to receive an albinism diagnosis. He was the first one with the condition in both our families so who knows how long those genes ran through both sides of our respective families? So happy to hear that Noah’s vision is not too much affected – that makes such a difference. My son is 9 now and in mainstream school and doing so well considering the challenges that come with albinism and his other diagnosis, autism. So happy to have found you and looking forward to reading more!

  2. beautiful! Glad you stopped by my blog, glad to “meet” you and love the blog. I love that at night your son’s eyes slow down as my son’s do as well. Thats why i still will rock him to sleep (at two years old) just to see his eyes slow and stay steady on me. What beautiful boys we have!

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.