My pregnancy with Mehlani was normal and healthy. I was 18, had no serious medical issues, and my checkups were always smooth. Labor went well too after ten hours, our baby girl was born. Myron and I were overwhelmed with love. She looked perfect to us, and we had no idea anything was different until our last day in the hospital.
It was Friday, and we were thrilled that the moment to head home had finally arrived. But before discharge, Mehlani had to go through her newborn screening. That’s when a nurse noticed something unusual about her eyes. She didn’t say much, just that a pediatric ophthalmologist would come to take a closer look. When he did, he said he couldn’t fully assess her condition without more tools and asked us to visit his office on Monday.
That weekend was hard. We had no answers, only fear. We focused on loving our new baby while trying to stay calm. Monday came, and Mehlani was diagnosed with Axenfeld-Rieger syndrome. While still in the womb, her irises didn’t develop completely, leaving mostly just the pupils visible. That explained her extreme light sensitivity. The doctor also mentioned other related issues, possible glaucoma, heart defects, even developmental disorders.
We were devastated. I was a first-time mom, already learning how to care for a newborn, and now faced a rare diagnosis I had never heard of. I blamed myself. I wondered if it was something I did, forgotten vitamins, not eating well enough. I looked at my daughter and felt like I had already failed her.
It took time and Myron reminding me it wasn’t my fault for me to stop carrying that guilt. In our eyes, Mehlani was perfcet, and we cherished every part of her.
When she was four months old, we saw a pediatric glaucoma specialist. Mehlani had to be put under anesthesia so they could get an accurate reading. That’s when we learned her drainage canals were malformed, causing dangerously high eye pressure. It had already begun to damage her optic nerves and give her eyes. Thankfully, we caught it in time.
She had her first surgery shortly after. They inserted artificial drainage canals to relieve the pressure. That day was scary, but everything went well. Since then, we’ve been diligent about checkups. So far, her pressure is stable, and her vision is okay but we take it one day at a time.
Aside from the medical issues, there are emotional challenges. Mehlani’s pupils are large and noticeable, so strangers often compliment her eyes. Their kind words melts my heart but also remind me that people see the difference. I worry about when she starts school. Will kids tease her? Will she be treated kindly?
That’s what moved my tweet. I just wanted to raise awareness and share my fear. The response was overwhelming. Messages from others with similar stories gave me so much hope and reminded me we’re not alone. What touched us most was the growing alertness about Axenfeld-Rieger condition and childhood glaucoma.
Mehlani is a sweet, strong little girl. We’ll always remind her how beautiful she is. And I hope everyone raises their children to be kind because our babies already face enough.
Life is hard, but love always wins.
