Yesterday Arlo has his yearly check-up at Duke Pediatric Eye Center. Last year, when he was a little over a year old, we learned through genetic testing that Arlo had Oculocutaneous Albinism type 2 and that his visual acuity was very good for someone with the condition. But they also told us we would need to wait until he was old enough to actually tell us what he could see in order to understand the full scope of how his condition was impacting his vision. In the meantime, we have continued to watch Arlo’s vision improve and have been eager for an update from his Opthamologist.
The first specialist that we saw projected a series of black and white shapes on a screen across the room: symbols such as a house, a car, a hand and a duck. She asked Arlo to identify them outloud. He is shy and usually takes a little while to warm up to new people, but he responded to her requests - quietly saying “hand" or “house" as she asked him what he saw on the screen.
When she covered one eye with a little hand held spoon, we watched as his nystagmus (an involuntary side to side movement of the eyes) began to go crazy. Arlo controls his nystagmus really well, so it was really interesting to watch his eyes react as he adjusted to using vision only out of one eye. I actually think his nystagmus makes him so uniquely beautiful because I notice it most when he is really happy. When he really loves something, his eyes will flutter back and forth like a character in a classic cartoon when they fall in love. It’s such a stunning, visible reaction to joy. It’s as if he always wears his heart on his sleeve, or in this case, his eyes.
The next specialist checked his eyes for a null point. A null point is a corrective measure that people with nystagmus learn to do to control their eye movements. They often find a place in their vision where their eyes will stay still and hold their eyes there in order to see more clearly. Sometimes this also means they have to compensate by holding their head to the side or looking out of the side of their eyes a lot (or up or down, depending on where their null point might be). If it the compensation is significant, sometimes a null point has to be corrected with surgery. Last year, they noticed a small null point in Arlo’s vision when he looked to the left, but this year, it was no longer there. The specialist commented that Arlo has fantastic control over his nystagmus and is able to hold his eyes still, looking straight ahead, when he wants to focus on something. She also checked him for any potential strabismus, which is when one or both of the eyes turn out or inward involuntarily. This is a common challenge with albinism and can often be corrected by patching the strong eye and forcing the weak eye to realign. Fortunately, Arlo has never had any strabismus.
Arlo’s last stop of the day was Dr. Buckley’s chair. Dr. Buckley is a renowned pediatric opthamologist who specializes in eye conditions like nystagmus and albinism. Whereas Arlo had been a little shy and insisted on sitting on Brent’s lap through the first two meetings of our morning, he happily climbed up into Dr. Buckley’s chair on his own. Dr. Buckley did another series of eye exams and gave us the great news that Arlo’s vision is 20/30 in one eye and 20/40 in the other. This is completely average vision for a two year old child as their eyes are still continuing to grow and do not usually reach perfect vision until late childhood. Every website that I have found on albinism states that people with albinism have vision ranging from 20/40 to 20/400. Arlo is already seeing better than the best case scenario for his condition! There is potential at this point, that as his vision continues to improve through adolescents, Arlo could have 20/20 or 20/30 vision. That’s better than MY vision! It feels miraculous to me, honestly.
Dr.Buckley also stated he was really impressed with Arlo’s ability to identify all of the shapes on the first eye test at 2 years old, as they usually have to wait until children are 3 or 4 years old to get a definitive reading on their visual acuity.
Considering that Arlo also had a speech delay of 9 months in comparison to his peers at 19 months old, this is an even greater feat for our little guy! His speech therapy has made huge strides in his verbal communication and has caught him back up to within just a month or two of his peers.
Dr. Buckley told us he has no major concerns for Arlo’s vision at this time. His chance of wearing glasses as he grows up are the same as any other child. Essentially, besides his photophobia (extreme sensitivity to sun light) his albinism is not having any major impact on his vision.
This is truly God’s work. I don’t know any other way to explain it.
I think back to the post I wrote after Arlo had first been diagnosed. I had no idea what an albinism diagnosis would mean for our son’s future. As the years have passed and I’ve met other families and immersed myself in the albinism community, I’ve learned that albinism is nothing to have grieved over like I did in those early days - The fact has always remained that his condition will never stop him from doing anything he sets his heart to do, regardless of how well he can or can not see. But I can’t deny that it is amazing to be where we are right now, with such an incredible prognosis for his vision.
