Learning About Axenfeld-Rieger Syndrome
“My pregnancy with Mehlani was overall normal and healthy. I was 18, I didn’t have any serious medical Issues, every doctor’s appointment was quick and easy. My labor was the same way. Everything went smooth and after 10 hours of labor, our baby girl was born.
Mehlanis’ father and I were in awe of our precious baby and ecstatic to receive our first child. We had no idea anything was different with her eyes, not until our last day at the hospital.
It was a Friday and we were going to finally be able to check-out and bring our baby home, but not after her newborn screening. That’s when we learned that something didn’t look right, the nurse that did her screening didn’t give any specific information, she just let us know that a pediatric ophthalmologist would be in soon to take a better look at her. The ophthalmologist arrived after a few hours but couldn’t tell us much either because he didn’t have all of the correct tools he needed to really evaluate her eyes, so he told us we would just have to take her into his office Monday morning.
We were left without any answers, just the fact that something was seriously wrong with our daughters’ eyes and we didn’t have the slightest idea of what it was. Needless to say, that weekend was emotional. Her father Myron and I tried to stay optimistic and just focus on caring for and loving our new baby.
Monday came around and we took her to her appointment where she was further evaluated, and that is where she was diagnosed with Axenfeld-Rieger syndrome. Her doctor gave us a further explanation of the condition. Our daughters’ eyes were under developed, her iris didn’t completely form in the womb, so she only had bits and pieces of it. Her eyes where mostly pupil. Which results in her being extremely sensitive to light. He then threw a bunch of other disorders that usually come along with Axenfeld-Rieger syndrome in the air, including Down syndrome, heart defects, and glaucoma.
Hearing this news devastated us. We didn’t know what was in store for our daughter’s future. I was a young parent learning how to be a mother on my own, and now on top of that had this rare condition I knew nothing about thrown at me. I felt so guilty for a long time after learning about my daughters under-developed eyes. I thought I had done something wrong during my pregnancy. Should I have ate better? Did this happen because of those days I would forget to take my prenatal vitamin? I couldn’t look at my beautiful baby without feeling like I had already failed her. I couldn’t fathom all of the hardships this precious tiny being will have to face.
It took a while of Myron reassuring me that everything happens for a reason, our daughter will be okay, and that none of this was my fault for me to stop blaming myself, to come to terms with it. Our daughter is and has always been perfect to us. We love every single thing about her.
It wasn’t until Mehlani was about 4 months old that we were recommended to a pediatric glaucoma specialist, so he could evaluate Mehlani and check for glaucoma. That was the first time Mehlani was put under anesthesia, so she could get an accurate pressure reading, and an exact look at what damage had already been done to her eyes. That is when we learned that Mehlanis’ drainage canals where malformed and triggering extremely high eye pressure. So high that it was causing her eyes to expand and making cracks in her cornea, the pressure had also started to cause some damage to her optical nerves, but we caught it on time to stop any serious damage.
Mehlani’s first surgery was scheduled to get artificial drainage canals put in, to help keep her eye pressure at bay. The day of her surgery was nerve-wracking to say the least, but thanks to everyone’s prayers for our baby girl, surgery went smooth. Ever since, we’ve kept up with her scheduled appointments to make sure her eye pressure has kept regular, and her eye vision remains well. So far, the surgery has been successful, but we don’t know what the future holds, we’re just taking it day by day.
Physical And Emotional Hardships
The hardships Mehlani will have to face throughout her life won’t only be medical. I know that because her eyes and pupils are noticeably larger than most peoples, strangers will comment on them when we’re out in public. Although the comments are always sweet and it warms my heart that other people too admire her beauty, I feel conflicted. It makes me realize that others notice the difference in her eyes, and that alone puts me into protective mama mode.
I start thinking about how it’ll be for my daughter once she’s old enough to start school, and kids approach her about her eyes. This is where my viral tweet about Mehlani came from. I have tweeted about her condition and how I wanted to raise awareness once or twice before, but this specific tweet was purely about my worries about children bullying my daughter.
Everytime were out & a stranger compliments on how big & beautiful her eyes are, I have a mental debate on whether or not I should mention her defect. I decide no, smile & say thank you. I’m always left with a weird feeling. I just pray she’ll always know how beautiful she is. pic.twitter.com/JUJyGkLbDe
— virgo sun mami (@kmvirgo24) September 13, 2018
The reaction I got from people was overwhelming! I never expected that this many people would read & appreciate my daughters’ story, but I feel like this reaction is exactly what I needed to put me at ease about the worries I was having. All of the beautiful comments and messages I received about my daughter were amazing. The amount of people with similar stories to Mehlani’s that took the time to message me to reassure me that my daughter will be able to live a healthy, normal life, and offering their listening ears and advice if ever needed was one of the greatest things about all of this. But what I love the most is the awareness I’m spreading about my daughters’ conditions. They are so rare and extremely unrecognized, and I’m so glad they’re finally getting the exposure that’s needed for all of the people with Axenfeld Rieger syndrome and Childhood glaucoma.
Mehlani is the most sweet, beautiful little girl, from the inside out. She deserves every lovely comment she’s getting. As the parents of a child with a rare medical condition, we know how stressful, emotional, and just plain difficult it is to handle. We have to stay strong for our babies even when it feels like there is no light at the end of the tunnel. I hope that with reading our story people going through similar situations feel less alone. We will all raise our beautiful children to be confident, and strong. I ask for the people whose children don’t have any medical conditions, please raise them to be kind hearted human beings. Our babies didn’t ask to be born this way, and we shouldn’t have to worry about them being bullied on top of everything else they have to go through.”
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