“My pregnancy with Mehlani was uneventful and uneventful. I was 18, I had no significant medical problems, and every doctor’s appointment was quick and painless. My labor went in the same direction. Everything went smoothly, and our baby daughter was born after a 10-hour labor.
Mehlanis’ father and I were awestruck by our darling baby and overjoyed to be parents for the first time. Until our last day in the hospital, we had no notion anything was wrong with her eyes.
We were finally going to be able to check out and take our baby home on Friday, but only after her newborn screening. That’s when we realized something wasn’t quite right; the nurse who performed the test didn’t give us any specifics; instead, she simply informed us that a pediatric ophthalmologist will be in shortly to take a closer look at her. After a few hours, the ophthalmologist arrived but couldn’t tell us anything because he didn’t have all of the necessary gear to properly test her eyes, so he told us we’d just have to take her into his office Monday morning.
We were left with no answers other than the knowledge that something was gravely wrong with our girls’ eyes and that we had no idea what it was. That weekend was, without a doubt, emotional. Myron, her father, and I attempted to remain upbeat and focused solely on caring for and loving our new baby.
When Monday rolled around, we drove her to her appointment, when she was further assessed and diagnosed with Axenfeld-Rieger syndrome. Her doctor explained the situation to us in greater detail. Our girls’ eyes were underdeveloped; her iris didn’t fully develop in the pregnancy, so she just had fragments of it. Her pupils were mostly closed. As a result, she has a high sensitivity to light. He then tossed out a list of other conditions that are commonly associated with Axenfeld-Rieger syndrome, including Down syndrome, heart abnormalities, and glaucoma.
We were devastated when we learned of this. We had no idea what the future held for our kid. I was a young mother learning how to be a mother on my own, and now I had this unusual ailment thrown at me that I had no knowledge of. After discovering my daughter’s underdeveloped eyes, I felt terrible for a long time. During my pregnancy, I was convinced that I had done something wrong. Should I have eaten more healthily? Was it because I forgot to take my prenatal vitamin one of those days? I couldn’t look at my lovely daughter without feeling like I’d already let her down. I couldn’t imagine the trials and tribulations this wonderful little life would have to through.
It took some convincing from Myron that everything occurs for a purpose, that our daughter will be well, and that none of this was my fault for me to stop blaming myself and accept responsibility. Our daughter is, and always has been, flawless in our eyes. Every aspect of her appeals to us.
We weren’t referred to a pediatric glaucoma expert until Mehlani was about 4 months old, so he could evaluate her and screen her for glaucoma. Mehlani was put under anesthesia for the first time so she could receive an accurate pressure reading and see what damage had already been done to her eyes. That’s when we discovered Mehlanis’ drainage canals were deformed, resulting in dangerously high eye pressure. The pressure was so high that it was causing her eyes to expand and fissures in her cornea; it had also begun to harm her optical nerves, but we found it in time to prevent any significant damage.
Mehlani’s initial surgery was to have artificial drainage channels placed in her eyes to cope with her eye pressure. To say the least, the day of her surgery was nerve-wracking, but thanks to everyone’s prayers for our baby daughter, everything went smoothly. Since then, we’ve kept up with her planned appointments to ensure that her eye pressure has remained consistent and her eyesight has remained clear. The surgery has gone well so far, but we don’t know what the future holds, so we’re taking things day by day.
Mehlani will confront a variety of challenges throughout her life, not just medical ones. Strangers will comment on her eyes and pupils since they are obviously larger than most people’s when we’re out in public. Despite the fact that the remarks are always kind and it warms my heart to know that others appreciate her beauty, I am divided. It makes me understand that people can see the difference in her eyes, which makes me feel like a protective mama.
When my daughter is old enough to start school, I start worrying about how it will be for her when kids ask her about her eyes. This is where my Mehlani-related viral tweet originated. I have previously tweeted about her health and my desire to raise awareness, but this particular tweet was just about my concerns about children bullying my daughter.
People’s reactions were overwhelmingly positive! I never expected so many people to read and admire my children’s story, but I believe this response is precisely what I needed to calm down about my concerns. All of the lovely letters and compliments about my daughter were wonderful. One of the most amazing aspects of this whole affair was the number of individuals with similar stories to Mehlani’s who took the time to write me and reassure me that my daughter will be able to have a healthy, normal life, as well as give their listening ears and advise if ever required. But it’s the awareness I’m sharing about my girls’ illnesses that I really like. They’re so uncommon and under-recognized, and I’m delighted they’re now getting the attention they deserve for all of the folks who suffer from Axenfeld Rieger syndrome and childhood glaucoma.
From the inside out, Mehlani is the sweetest, most lovely little child. She is deserving of all the compliments she is receiving. We realize how stressful, emotional, and just plain difficult it is to be the parents of a kid with a unique medical condition. Even when it appears that there is no light at the end of the tunnel, we must remain strong for our children. I hope that by reading our experience, people who are facing similar challenges would feel less alone. We’ll all raise our lovely children to be self-assured and strong. Please nurture your children to be kind-hearted human beings, even if they don’t have any physical conditions. Our children didn’t ask to be born this way, and we shouldn’t have to worry about them being bullied on top of everything else.”
The story and photos: Courtesy Karina Martinez