Hand to Hold's Official Blog: Written by Parents for Parents

Through My Son’s Eyes; Challenges of Peripheral Vision Loss

Some people would say James is clumsy or he doesn’t pay enough attention when he walks. Those thoughts have crossed my mind even though I know the reason he stumbles and falls has very little to do with either one. He does have a short attention span, and he continues to work on balance and coordination in physical therapy, but the bigger issue at work here is vision loss. James has permanent peripheral vision loss due to laser treatment for Retinopathy of Prematurity (ROP). James is a former micro-preemie who was born one day shy of twenty-three weeks gestation. One of the many hurdles he faced while in the NICU was ROP.

Retinopathy of Prematurity is a potentially blinding disorder that causes abnormal blood vessel growth in the eyes. The National Eye Institute explains that the eyes begin to develop around the 16th week of pregnancy and are fully developed three to four weeks after a full term birth. Premature birth interrupts normal eye development and blood vessel growth temporarily. When it resumes, blood vessel growth can be abnormal, fragile, and cause pulling on the retina. This is diagnosed as Retinopathy of Prematurity. The severity of ROP ranges from mild (Stage I) to severe (Stage V), and occurs in different areas, or zones, of the eye. Typically, if ROP does not progress beyond Stage II it will resolve on its own. Often times, Stage III ROP and higher requires treatment to stop progression of the disease. For our son, who was diagnosed with Stage III ROP with Plus Disease, that treatment was laser surgery.

Plus Disease can progress rapidly, so the time from diagnosis to laser surgery was two days. James was 14 weeks old at the time. He had spent 3 1/2 months in the NICU already, had two previous surgeries, and only been ventilator free for two weeks. James had the usual ups and downs of the NICU and he wasn’t out of the woods yet, but was the strongest he had been. We felt as prepared as we could be for surgery. This was the best/only option to save his vision. What we weren’t prepared for at the time was the life-long impact this surgery was going to have.

Laser Surgery is used to stop the abnormal blood vessel growth in the eyes. In order to do that, the abnormal blood vessels are hit with laser strikes that essentially burn away those vessels. In addition to destroying the blood vessels, the laser strikes destroy part of the retina used for peripheral vision. Most of us think of peripheral vision as the vision that allows us to see things beside us, which it is. Peripheral vision is also the vision that allows you to see objects above and below you. It allows you to see objects you may bump your head on and objects you may trip over. For those still learning to navigate their world, loss of vision in these areas adds a whole new challenge.

navigating the playground

Playgrounds can be especially challenging with limited peripheral vision.

Imagine walking across a playground and not being able to see surface changes or curbs, not being able to judge distance as you attempt to walk under play equipment. Imagine a world that is constantly producing unseen obstacles which cause you to stumble and fall or bang your head. That is the world for some children who have had laser surgery to treat Retinopathy of Prematurity. It is definitely the world for our son.

Peripheral vision loss due to laser strikes is permanent. No amount of treatment will bring that vision back. What we can do is teach James strategies he can use that will help him recognize, remember, and avoid objects in his periphery and navigate his world a little safer. Vision Therapy and Orientation and Mobility have been important components to keeping James safe on the go.

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Engaging James and working on vision strategies can be as simple as rolling a ball.

A few of the tips we have learned include:

  • The importance of a clutter-free house. Admittedly, not a strength of ours, but we’re working on it. Makes sense that fewer objects around means fewer objects to trip over.
  • Mark stairs with contrasting tape to draw attention. In addition to helping James, this actually helped everyone, especially when walking through the house at night.
  • Make paths to follow. We traced James’ footprint and cut out lots of brightly colored feet. We taped the feet to the floor, creating paths for him to walk along. The bright colors helped draw his attention toward the floor, allowing him to see obstacles in his path.
  • Play games that require him to look to his sides and up & down. It is important for James to know these parts of his world still exist, even when he doesn’t see them. Simply rolling a ball to each side, between his legs, and flying it over his head helps to draw his attention to areas he doesn’t see when looking straight ahead.

Peripheral vision loss will always be a challenge for James, but a challenge he can learn coping skills for and live with. As he gets older we’ll know more about exactly what he is able to see, and what that means for his future. School work, driving, and many jobs can all be affected by peripheral vision loss. In addition, his vision will always need to be monitored regularly. Retinal detachment can occur at any time for children who have ROP, even into adulthood. We have hope though. One of James’ neonatologists shared with us that a former professor of hers in medical school was premature and suffered from ROP. He wore very thick glasses, and he had one of the most brilliant minds she had ever known!

Alison Epps About Alison Epps

Alison (TX) has one child, James. He was delivered by emergency c-section at 22 weeks 6 days gestation, he weighed 15oz. and was 10 ½ inches long. He endured a 160-day NICU stay with 4 surgeries and multiple complications. He is now an active 5 year old who recently started Kindergarten! You may connect with her on her personal blog, Facebook or email, 22w6d@gmail.com. She hopes to encourage change in hospital policy so babies born at less than 23 weeks gestation will be given a chance at life.

Comments

  1. Thanks for this, Alison. My son also had laser eye surgery due to ROP (he had Rush ROP. It’s PLUS disease, but super fast progressing). I’ve often wondered what his vision is like. I know he’s lost a significant amount of peripheral vision. I noticed he loved crawling on a track, be it the edges of the rug or a painted path at a park. I’ve also noticed he loves turning his head from side to side and saying “hi” each time we come back into his field of vision. And my oral-adverse former 23 weeker doesn’t explore by mouthing on things, instead he gently takes his forehead and moves it to the corner of the walk or carpet or blanket and puts his forehead into the object a few times — I think he’s judging distance and texture. He wears glasses for nearsightedness, and he notices that things are a different distance from him depending on if he has his glasses on or off.

    • Thank you for sharing your son’s experience Laura. I love that there are places like this where we can share, and realize that we aren’t alone in this journey. My son drags his forehead along floors and walls. I never thought about it being related to vision, but I bet you are right. Definitely makes sense. Best wishes to you and your little guy.

  2. Love these types of posts that I can share with friends and family! My 26-weeker is 6 now, and it’s just a habit for me to announce steps and curbs that she may not be able to see after laser treatment to her eyes. When she took tumbling classes at age 4, the balance beam was incredibly tricky for her to maneuver. I felt like such a goofball when I finally realized why she was struggling so much.

    It’ll be interesting when she’s older and able to articulate what her vision is like…but then again, she doesn’t have anything to compare it to!

    • I wonder how much he’ll be able to tell us about his vision as he gets older too Melissa. You’re right, when it’s all they’ve ever known, it’s normal to them. One more thing that makes me sad for all they go through.

  3. Melissa Ayala says:

    Thank you so much for posting this! It is so helpful to know other’s recognize the significance of periphersal vison loss. My son was a 23 weeker and also had ROP and required laser surgery for both eyes. His eye doctor that follows him for the ROP continues to tell me that my son will adapt to having this vision loss and does not think it will be a significant problem in his life. However I bring it up at every appointment about his clumbsiness, banging into walls, tripping on anything and everything, still has difficult yon stairs, play groung equipment, etc. His eye doctor just thinks he is a “cumbsy toddler”. He is turning 3 next month and I am so afraid of him going into preschool and not qualifying for services after Early Intervention is done, knowing I still see areas that he needs help. So thank you for this article, it truely helps puts some light on what I see that his doctor doesn’t.

    • Thanks Melissa. I think we’re still figuring out just how significant this is. We have a doctor who tends to brush it off as well. I think as we live with it, we have a much better understanding of how important it is, and will be better equipped to advocate for his needs as he gets older. I think it’s important that you continue to bring it up with his doctor. Hopefully one of these times he will really hear you.

  4. This is fascinating to me. I was born at 24 or 25 weeks back in the 1950s and was lucky enough to emerge with only severe astigmatism and, although I didn’t realize it until very recently, a huge loss in peripheral vision. I never knew that people actually could see below their noses and above their line of sight. No one really warned my parents about my vision at the time. So it fascinates me to see all of the advances made and the care taken.

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