Name: Hi my name is Renae, I’m sharing my son’s eye story. His name is Maverick. We call him Mav.
Social media handles:
@nae_heusser
Where are you from?
Fresno, California
Where do you live now?
Seattle, Wa
Tell us a little about yourself:
I work as a nurse at Seattle Cancer Alliance. I mostly grew up in Washington. I met my husband, Ian, 4 years ago on tinder. We moved in together and eventually got married at one of our favorite hiking destinations. Then one year later, out popped a baby! Maverick is our first baby who we love and adore. He loves to laugh and smile when we sing to him. He especially loves the song, “Bare Necessities.” He also prefers “crinkle” paper over all the toys we bought for him. He just sprouted his two front teeth, and he loves to munch on avocados and bananas. He loves nature walks! We are so excited for
summer hiking with him and spending family
time at our cabin near Mount Baker.
What’s Mav's eye story?
At Maverick’s first outpatient appointment at only 4 weeks old, the doctor performed a red reflex test. His right eye had a negative red reflex. The doctor explained to us it could be a cataract or retinoblastoma. We were terrified with so many thoughts running through our heads. He referred us to an ophthalmologist, and we learned that he was born with severe persistent fetal vasculature. This caused him to have a dense cataract and a smaller, undeveloped eye. It is a condition that is not genetic, but a birth anomaly of the eye that cannot be explained.
Due to the severity of his condition, his ophthalmologist referred Maverick to a retinal surgeon in Portland, OR to remove the cataract. The surgery was successful, and we started the process of patching his good eye so that his brain could focus on the bad eye, and improve its vision. This process was difficult because he already had low vision in his bad eye. I felt like I was blinding him for hours every day. He hated it! We also had to insert a high-power contact lens. Putting contact lenses in a baby’s eye is NOT easy!!! We were prepared to patch his good eye for the next 7 years for 6 hours a day to improve his vision in his right eye.
After about a month, I noticed that his pupil was becoming smaller in his bad eye. Once his ophthalmologist examined his eye, she knew a membrane was forming within it. It was caused by his eye condition and his last surgery. We had to prepare for a 2nd surgery to remove the membrane. The surgery was successful, and Maverick had a pupil again! At his follow-up appointment one week later, the doctor performed an ultrasound of his eye and found that his retina detached. He is now blind in his right eye. We were always told of the risks of surgery and how retinal detachment could happen. We were giving him a chance and we were hopeful because there are many success stories of kids regaining sight of their PFV condition through the process of patching. Unfortunately, his was not.
What has been the most challenging thing mentally?
Maverick had to endure many eye examinations, which he hated. It was hard to see him scream and cry when the doctor had to open his eye to examine it. As a new mother, postpartum hit me hard and made it difficult to cope with his vision impairment. Seeing my baby undergo several surgeries was extremely difficult. We really thought he would be able to gain sight in his right eye. I never heard myself cry as I did when the doctor told me Maverick’s retina detached.
What has been the most challenging thing physically?
Maverick does not care what he looks like since he is a teenie, cute baby! However, when I show pictures of Maverick, I have gotten comments like, “what’s wrong with his eye?” or “hey, he looks like he is winking at me!” It is difficult at times to talk about it with people who are outside my family and close friends because I am still coping with it. It is difficult to see my baby’s eye irritated due to his eye conformer. I know someday he will question why he cannot see out of his right eye, or he may even have a tough time with being different. My husband and I strive to raise our son with confidence and self-love. We will not hold him back from anything. We know it will become a part of him and his personality.
Where is Mav now in his recovery?
For the first 4 months of Maverick’s life, it was all about his eye and whether he would have vision in it. It gave me anxiety and worry to just sit and think of his eye. Even though we were devastated about his vision loss, it also gave us some sense of ease. We did not have to worry about it any longer. No more surgeries, no more frequent eye appointments, and no more patching of his good eye. I know he will be okay. He can still see my face and smile with his good eye. We learned to adapt to his condition, and we are in a much better place. We can focus on moving forward and we now enjoy watching him grow!
What piece of advice would you give to someone going through their eye impairment journey?
I cannot give advice about vision impairment personally; however, if you are a parent going through this, my advice is to give yourself time to feel whatever you are feeling. My husband, friends, and family were a great support group. Talk it out with them and share your fears and other emotions. But it will get better, and you will learn to adapt quickly to your kid because of that sweet, unconditional love!! We are thankful to have a healthy, growing boy.
Who are Mav's eye surgeon and ocularist?
Todd at Northwest Eye Design in Kirkland, WA! The staff is all wonderful and accepting. They love baby Mav! Since Mav was born with a smaller eye, he is receiving a new conformer monthly to help promote the growth of the surrounding tissue and orbital bone. Later down the road, he will get his first scleral shell.
How did you find EYEHESIVE? Instagram.
The first thing I did after learning about my son’s monocular vision, found support groups. I found many kids who were born with the same condition as Maverick’s. The support groups also gave me insight into people's journeys through life with having one eye. It helped, in a way, to know my son will still live a normal and happy life :D
What would you tell a caregiver who is going through a vision impairment journey with someone they care for?
You heal in time, just as they do. It will get better, I promise.
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