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Posted on: January 24, 2019 at 4:00 pm
Last updated: May 10, 2019 at 10:54 am

CafeMom contributor Patricia Williams talks about her experiences having two amazing babies born with albinism. In a post published on the blog, she first talked about her second baby Redd, and how at the time she knew nothing about albinism. When her baby was handed to her, she was thrilled at his sparkly white hair and lovely blue eyes. He was the most perfect thing she’d ever seen.

“At the time,” she wrote, “We should have realized there was something extra special about him when nurses (who were not our nurses) were coming in to see the “baby with white hair”. My husband and I were both so happy to show him off. We had both been born with blonde hair (and so was our first son Gage), so seeing our second son with such blonde hair didn’t strike us as unusual.”

“His blue eyes would sometimes flash red when he was in certain light.”

Patricia talks about the three most outstanding things about her angel baby; his sparkling hair, his constantly dashing eyes, and the change of color in his eyes.

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The first was his hair. It was so white it would sparkle in the sunlight. I pointed it out to my mother-in-law who just said, “He’s like a special little fairy.” Second was the way his eyes were always dashing up and looking up and back in constant motion. I would try and block his view with my hands to see if he would divert his eyes down, but nothing ever worked. Third was how his eyes would somehow flash red when he was in certain light. This was by far the strangest occurrence. Patricia and her husband didn’t know what these things meant. They felt he would grow out of them soon enough. Little did they know there was a lot more to his unique attributes than just being newly born.

Learning about Redd’s nature

The couple had to conduct some research about Redd. They were most concerned about his eyes tracking constantly. When her husband conducted an internet search, he immediately read the word ‘albinism’. Patricia had never heard the word and had no idea what it meant. She knew about albinos, she never heard ‘albinism’.

“I remember him looking at Redd and saying, ‘White hair, pale skin, tracking of the eyes… he’s an albino!’ My immediate response was, ‘No he’s not! Don’t they have red eyes?’” The couple decided they needed to learn as much as possible, looking up basically everything they could find on albinism. At the end of their exercise, it became clear to them that they needed to consult their pediatrician.

The pediatrician was shocked she hadn’t noticed it initially. Redd had refused to open his eyes during his examinations, so the doctor was unable noticed the eye color change or tracking. The fact that he kept his eyes shut so much made a lot of sense to them at that point. Albinos are extremely sensitive to bright light. They were referred to a genetics specialist who described his nature as OCA1 (Oculocutaneous Albinism type 1).

He told us there are various forms of albinism, but the OCA1 Is the most common in which the body produces little to no pigment in skin, hair, and eyes. He said that the white eyelashes and white eyebrows are the easiest way to tell the difference between someone with albinism and someone who is blonde. Being clueless as to how ignorant I sounded, I decided to ask, ‘But aren’t they supposed to have red eyes?’

The specialist had laughed, telling her that he believed only rats had naturally red eyes. The doctor further explained to them about the recessive gene that caused albinism. He believed either she or her husband could be carriers of the gene, and that someone in either family side could be albino.

“The first person I thought of was my grandmother who raised me. She was part Native American and had been born and raised on an Indian reservation. She was also very light-skinned, blue-eyed and had platinum blonde hair her entire life. She was almost 90 years old. I called her up and asked her, ‘Gram, are you an albino?’ She laughed and said, ‘Doctors have been telling me that my whole life, but I’m not.’”

Redd’s trip to the optometrist

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This trip broke Patricia’s heart. She got some unfortunate news about Redd. She learned that Redd had eye conditions that would most likely impair his vision in the future. Not that he’d be fully blind, but blind enough to be denied a driver’s license.

When I took Redd to see the optometrist, she confirmed that he had iris transillumination (the reason his eyes would sometimes reflect red in certain light), nystagmus (the tracking of the eyes back and forth), and strabismus (one eye was cross-eyed). I was completely unprepared when she told me Redd would most likely be legally blind and unable to get his driver’s license. I felt as though I had just been struck in the stomach with a bowling ball. I remember crying all the way out to the parking lot and the entire drive home,” Patricia wrote.

More babies after Redd

The couple learned that there was a 25% chance their following kids would have albinism too. When Wolfgang (her third boy) came, she knew he wasn’t an albino. He had olive skin and light brown hair and was just as adorable as Redd. When her fourth baby Rockwell came, the doctors in the labor room had been dazed by the platinum blonde hair on his head. She and her husband were happy to have another albino baby.

She admits how it’s been an adjustment getting used to the attention her children receive. Everywhere they go, people want to touch them, and everyone always has something to say about their hair and pale skin. They try their best to always be openly positive about the way they talk about their children. They wouldn’t them growing up to feel different.

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She says they try not to restrict Redd from doing things other little boys like to do. The most important things to help him develop are confidence and positivity. They intend to raise Baby Rockwell just the same. They are already dealing with teasing and unkind words directed at Redd. Kids at the playground aren’t always fair and nice to Redd, although most of the time, they’re unintentional. Kids tend to be brutally outspoken sometimes.

Patricia leaves a strong piece of advice for parents with kids like Red and Rockwell. “If you have a child that’s a little different or has special needs, or sometimes just doesn’t fit in with the crowd… it’s our duty to provide them with tools in order to withstand how cruel the world can be.”

  1. Patricia Williams. 2018, November 26. I gave birth to the babies with white hair and this is what I need you to know. Retrieved from http://www.thestir.cafemom.com/parenting_news/216363/giving-birth-albino-baby
  2. National Organization for Albinism and Hypopigmentation (NOAH). No date available. Information bulletin – What is albinism? Retrieved from https://www.albinism.org/information-bulletin-what-is-albinism/
  3. Richard Alan Lewis. 2000, January 19.  Oculococutaneous Albinism Type 1. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK1166/
  4. American Academy of Ophthalmology. No date available. Iris transillumination. Retrieved from https://www.aao.org/bcscsnippetdetail.aspx?id=d0fe6973-e911-4be0-b834-c01b577fc16d
  5. Kierstan Boyd. 2017, September 1. What is Nystagmus? Retrieved from https://www.aao.org/eye-health/diseases/what-is-nystagmus
  6. American Academy of Ophthalmology. 2014, April 14. What is Strabismus? Retrieved from https://www.aao.org/eye-health/diseases/what-is-strabismus
  7. SickKids staff. 2011, August 11. Albinism and genetics. Retrieved from https://www.aboutkidshealth.ca/Article?contentid=877&language=English
  8. Image Credit: Patricia Williams

 

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Megan O’Neill
Lifelong writer
Megan is a lifelong writer and is currently studying nutrition. Megan studies yoga and wants everyone to be living their best lives.

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