The Children’s Eye Foundation is honored to share the following story of Gus, an adorable, happy little guy. A very big thank you to his mom, Carrie Groleau for sharing with us! We hope that hearing others’ stories like his, parents who find themselves navigating a new world of childhood vision concerns for their own children will know that they are not alone! We hope to bring more stories of how parents and caregivers have helped their cute kiddo with a new diagnosis. If you’d like to share your story, let us know here!
Our Vision Journey With Gus: The First 18 Months
By Carrie Groleau
Moments after our son August (“Gus”) was born, my husband and I noticed he only opened one eye. Our intuition suspected that, perhaps, something wasn’t right. Then, during a routine exam with our pediatrician a few hours later, we learned Gus had no red reflex in his left eye. By the time he was four hours old we had an appointment scheduled to see a pediatric ophthalmologist. Four days later Gus was diagnosed with a unilateral congenital cataract, something I didn’t even know was possible. I had always associated cataracts with elderly people and animals, but soon learned that approximately three out of every 10,000 people are born with a cataract in one or both eyes.
I will never forget the day I learned my newborn son would require multiple eye surgeries during his childhood. He would have to wear a contact lens I would be responsible for, he would need to wear an eye patch over his strong eye for vision rehabilitation every day for the foreseeable future, he would wear glasses, and he would always be at a greater risk for developing glaucoma, a condition which has the potential to cause permanent vision loss. After returning home from the appointment, I cradled Gus in my arms, watched him as he slept, and spent the remainder of the day in tears, grieving the news I had just received about my son’s vision. And yet, I was filled with gratitude that my beautiful baby boy was healthy in all other regards. I felt overwhelmed by uncertainty, anxious about subjecting my infant to general anesthesia and surgery, and worried about putting my baby in the dark by covering his dominant eye with an eyepatch. I wondered what emotional trauma patching might cause and feared he may face physical or cognitive delays as a result. At the same time, I felt comforted knowing that whatever struggles Gus might face in life, he would always have the love and support of his family and that we would do everything in our power to give him the best life possible.
After additional exams over the next few months, it became evident Gus had zero vision in his left eye. His tiny pupil did not react to light, and his affected eye was significantly smaller in all dimensions than the other. An eye exam under anesthesia (EUA) confirmed his doctor’s suspected diagnosis of micropthalmia, and she explained that cataract surgery may be too risky due to potential complications associated with Gus’ underdeveloped eye. She gave us a grim prognosis: Even with surgery, contacts, glasses, and years of occlusion therapy, Gus would likely only achieve 20/200 vision with correction at best, leaving him legally blind in his left eye. This initial ophthalmologist offered little to no hope for Gus ever gaining useable vision in his small eye and even offered to refer us to an ocularist to discuss the process of eventually getting a prosthetic eye. Looking back now, it’s hard to believe we even had that conversation.
Thankfully, there was a second ophthalmologist present during the EUA, a newly hired retina specialist, who shared a different opinion. She recommended we visit Dr. M Edward Wilson at the MUSC Storm Eye Institute in Charleston, South Carolina. This doctor gave us encouragement when discussing her experience in working with Dr. Wilson and said, “Just trust me.” She truly believed that taking Gus to see Dr. Wilson would give us our best chance at giving our son the best vision possible, and she was right.
Prior to traveling ten hours roundtrip for an appointment, my husband and I scheduled a phone conference with Dr. Wilson. Our immediate impression was that Dr. Wilson understood exactly what was going on with our son’s eye. He knew exactly what needed to be done to give him a chance at gaining vision and he was empathetic to how we felt as parents. I will never forget Dr. Wilson’s response after I told him about the initial prognosis we had been given. He said, “We can’t know the outcome until we try, and I would certainly hate to not try.” Dr. Wilson gave no guarantees, but he gave us hope. He said that when Gus is older and asks us about his vision, whatever the outcome, we can tell him we gave it our all and we tried everything. My husband and I felt at peace moving forward with the surgery, knowing we had found Dr. Wilson, an expert and pioneer in the field of pediatric cataract surgery. He is not just a good doctor, but a good person. We felt confident he would do everything possible to help our son.
In December 2016, at the age of four and a half months, our son Gus had his first eye surgery to enlarge his left pupil and remove his cataract and natural lens. At this time Gus began wearing a specialty high-power contact lens that provided vision correction while also serving as a prosthetic lens. As my husband and I sat in the waiting room, Dr. Wilson came to explain that Gus had another condition called persistent fetal vasculature, meaning vascular structures that should have disappeared on their own during pregnancy were still present, leaving his eye smaller and immature. He explained it is common for individuals with PFV to also be born with a cataract. Those with PFV nearly always have a microphthalmic eye, and in many cases, they develop strabismus and amblyopia, both of which Gus had. Dr. Wilson surgically removed the persistent fetal vessels and hyaloid stalk at that time. Before this surgery, Gus had developed a severe eye wander with his left eye turning both upward and out, indicating that his brain relied on the stronger eye. Dr. Wilson told us patching could help reduce the eye turn by forcing his brain to rely on the weaker eye but added that if significant improvements were not made over the next few months, muscle surgery would be an option.
Gus recovered from his cataract surgery as expected but unfortunately lost his contact lens after less than a month. Little did we know we would lose another dozen within the next nine months. Gus has a steep, dome-shaped cornea, which caused his contact lens to slide, either under his eyelid or out of his eye altogether. I quickly developed a habit of checking his eye before picking him up, moving to another room, or getting him out of his car seat or stroller. I learned techniques for getting the contact back in place by applying rewetting drops and massaging the skin around his eye, and I quickly became an expert at contact lens insertion and removal. I recall multiple occasions when I had to reinsert Gus’ contact in public, often during story-time at the library. I’ll never forget the time my husband and I reinserted Gus’ contact in the middle of a crowd at Disney’s Magic Kingdom. I once had an observing stranger say to me, “How do you do that? I would never be able to put a contact lens in a baby’s eye. I can’t even put one in my own eye!” My reply was, of course she could do it, if she had to, if her baby’s vision depended on it. As daunting as it all seemed in the beginning, contact lens wear and patching became just another normal part of our daily routine.
One of our biggest challenges came when Gus was five and a half months old, and we began patching his right eye for half his wakeful hours. Thankfully Dr. Wilson prepared us by saying the first three days of patching would probably be the hardest of the entire journey. I made sure to begin our first day of patching while my older daughter was at school, so Gus could have my undivided attention. I laid out a blanket with an assortment of high-contrast board books, rattles, and light-up toys. I even wore black and white clothing to make myself more visible. Within moments of putting the adhesive patch over Gus’ right eye, he seemed disoriented, but still responded to my voice with a smile. He kept closing his eye and would not engage with any of the books I showed him. He quickly became frustrated, confused, terrified, and began shutting down. It was a struggle to keep him awake. Gus took three naps that day, and I was so emotionally exhausted that I just watched him sleep! When he woke up from his third nap and began his third hour of patching it was as if a light switch in his brain turned on! All of a sudden, he was cooing, playing with toys, and looking toward family members when we spoke. It was a life-changing moment for me. My anxieties were put at ease because I knew everything was going to be okay. It took about one hour for Gus’ brain to click on the second day, half an hour on the third, and less time with each day after that. Still, he required constant attention during those first few months. While some days were harder than others, patching soon became our new normal, and with each day it became clearer that Gus could see with his left eye. Vision correction combined with patching have done wonders for our son’s eyesight. Words can’t describe the pride I feel each time Gus makes a new discovery, masters a new skill, or reaches a developmental milestone, especially while wearing his eyepatch. Patching has not always been easy, but it has always been worth it.
Gus quickly learned to see with his left eye while patched, yet it continued to wander during other parts of the day as his brain would switch back to his stronger eye. Patching helped reduce the frequency of his eye-turn, but not as much as we had hoped. Surgical intervention was needed for Gus to have a chance at gaining depth perception and binocular vision, which we had hoped he might achieve before learning to walk. When Gus was 8.5 months old, he had surgery to realign the muscles in his left eye and the results were astounding! We noticed immediate improvement in cosmetic symmetry and Gus began tracking with his eyes together more than ever before. At this age Gus was an active little guy, crawling and cruising along the furniture, feeding himself, and developing quite the personality. He bounced back quickly after strabismus surgery and was behaving like his usual self on the following day.
We were thrilled when Gus began walking two weeks before his first birthday, making it known that he would never let his eyepatch, or his vision issues, slow him down! To celebrate his amazing first year, I planned a pirate-themed birthday party complete with pirate patches and hats, a temporary tattoo parlor, a treasure hunt, ring toss game, photo booth, pirate-themed foods, and the crowd favorite, a patch-decorating station for guests to create fun patches for the birthday boy’s collection. Gus’ pirate party was a special way to celebrate all we went through during his first year.
In the week following Gus’ first birthday, his eye pressure was elevated beyond the normal range and we started giving him prescription drops twice per day. Around the same time, Gus’ left eye began showing signs that it no longer tolerated his contact lens. For months we had been struggling with ill-fitting lenses and the constant stress of losing expensive contacts which took weeks to receive. Gus’ poor eye would turn bright red by afternoon every day and eventually within an hour of insertion. He was experiencing obvious discomfort on a daily basis and he figured out how to remove his contact lens by himself when he felt bothered by it. Eventually Gus’ contact lens was falling out multiple times every day. I felt like contact lenses were controlling my life, not to mention how much these problems disrupted our daily patching routine. We tried six different sized custom lenses made from a different material hoping to find a better fit. While these new lenses didn’t cause irritation and redness like his previous contacts, none of them would stay in place for more than half an hour. After losing nearly four months of progress due to inconsistent vision correction and patching, we made the decision to move forward with a third surgery for Gus to get an intraocular lens implant (IOL).
It was hard to accept that we failed with contact lenses and make the decision to subject our toddler to yet another operation. We always thought Gus would get his IOL when he was older, but it turned out to be the best thing we could have possibly done for him. Gus had his IOL placement surgery in December 2017, at the age of sixteen and a half months. The procedure went well, and it has been such a relief to not worry about a contact lens on a daily basis or see Gus uncomfortable. It feels so good to be patching consistently again and know we are back on track with his vision rehabilitation. Unfortunately, Gus’ eye pressure spiked after the surgery. After six weeks on a combination of eye drops and an oral medication for the treatment of glaucoma, his eye pressure returned to the normal range, although it has fluctuated since. We still give him eye drops twice daily and get his pressure checked often. Glaucoma is a scary diagnosis, but thankfully one that can be monitored with frequent pressure checks and is treatable with a variety of medications and surgical procedures.
Now, at one and a half years old, Gus wears glasses over his IOL to correct his nearsightedness, improving his distance vision. I have been surprised at how well he has taken to wearing them, and I think he looks adorable with his red frames! Gus has been happier and more compliant during patch-time with his glasses on since he can see the world around him more clearly. Despite all our previous complications with contact lenses and the times we were unable to patch, I believe Gus’ eyesight is stronger than ever before.
The last eighteen months have been full of successes and setbacks in our vision journey. Overall, we have made incredible progress thanks to Gus’ remarkable ophthalmology team, three successful surgeries, vision correction, and patching. The fact that Gus was born blind in his left eye and now has vision in both eyes will always feel miraculous to me.
I can wholeheartedly say I have become a better person because of Gus and have learned so much through the obstacles we have faced together. One lesson I feel the need to pass along is that there no such thing as asking too many questions when it comes to the health and well-being of one’s self, spouse, parent, or child. There is great value in seeking a second, or even third, medical opinion, and I would encourage all parents facing a new diagnosis for their child to research, find support, and choose a doctor who is well-qualified and cares. We are so lucky to have been referred to Dr. Wilson and will be eternally grateful for the excellent care he has provided to our son. It is because of Dr. Wilson and our commitment to patching that Gus can see with his left eye.
My hope in sharing our son’s story is for others facing a similar situation to know they aren’t alone. There are wonderful support groups on Facebook full of parents who have been there before and who are happy to answer questions based on their own experiences. I have formed incredible friendships through these groups and have been comforted by talking with others whose children have eye issues similar to my son’s. Forming a network of camaraderie and support has made this process so much easier. Thanks to the Children’s Eye Foundation and social media platforms like Facebook, Instagram, and personal blogs, parents of children with rare eye conditions are able to connect more than ever before.
It’s hard to convey the pride and joy I feel watching Gus discover the world around him, knowing he is thriving and his eyesight is improving every day. Gus is a sweet, funny, and feisty toddler who loves to play outside, climb, dance, and spend time with his big sister. He wears an eyepatch for half his wakeful hours and has reached all of his developmental milestones on time. His eye conditions and eyepatch will always be a part of his story, but they will not define him. Gus is incredibly resilient, brave and strong, and inspires all who know him. Most importantly, Gus is a happy, healthy child. I am so thankful to be his mother and to be on this journey together. The road is long, but I have hope and a firm belief that the destination will have the most spectacular view.
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