I’m Hannah, the mom of 4-year-old Lane. Lane was born with Optic Nerve Hypoplasia and what some would call Septo Optic Dysplasia, resulting in complete blindness and panhypopituitarism. Let me start from the very beginning…

Lane’s dad, Andrew, and I married at the young age of 19 since he was in the military. While he did his thing, I did mine, studying towards my college degree. Months before both of our graduations in March of 2018, I became pregnant, not knowing a single thing about babies or how any of this was going to work. Despite our unpreparedness, I was super lucky to have a breeze of a pregnancy with doctors’ constant affirmations of health.

And then there was his birth. An agonizingly long labor resulted in “CODE BLUE”; Lane was [ironically] blue, stunned, his umbilical cord wrapped several times around his neck, broken clavicle. My face was swollen, like really swollen, and I remember 10 people hovering over me, their cheesy smiles masking fear exclaiming, “Look at your baby! He’s so beautiful! Everything will be okay!” He was on a table 5 feet from me, but my vision was so blurred from all the physical trauma that I couldn’t see a thing.

He spent 6 days in the NICU and was released the day before Christmas. At the time, I was frustrated with the fact that they made him stay at all, but in hindsight, he really should have spent longer. I think the holiday made everyone anxious and more dismissive of the issues. His biggest problems were low blood sugar, poor feeding, jaundice, and mildly low oxygen. There was an instance in the hospital where we were allowed a “test night,” where he was able to sleep in the room with us. The nurse came in to check on him at one point, and due to his lethargy, she rushed him back to the NICU. Andrew and I didn’t know any different.

At Lane’s first doctor’s appointment, I remember the doctor’s gaze of horror at my scrawny, orange, oxygen-dependent baby, and my total surprise and confusion. This is what I thought infanthood was. He was born at 8 lbs 4 oz at 42 weeks, seemingly healthy. Why were they targeting him? It must have been because of the rough birth—they’re being too cautious. Against my feelings, we brought him in every other day for weight checks to ensure he was gaining.

Lane flunked his thyroid test on his newborn screening. Everyone was confused. I was told that this is the case with many babies and that he’d be retested. He flunked again. It wasn’t long after that the doctor noticed what she described as peculiar eye movements (nystagmus), and we were sent to a pediatric ophthalmologist. At this point, I was thoroughly annoyed. I explained to the eye doctor that his pediatrician was overly alert, and that he was totally fine. Post examination, she proceeded to tell us that he had small optic nerves, which in her experience, prognoses range from nearly perfect vision to complete blindness. While this may seem scary, I surprisingly wasn’t stressed at all. “He’s obviously not blind.” I couldn’t even fathom that reality.

Fast forward to his MRI (which with my little knowledge on the matter, I was very skeptical), and my itty bitty baby was put in this giant, scary machine. Andrew and I sat in the room and danced to the rhythmic beeps, trying to make light of it all. We’re good at that.

That’s when an endocrinologist transcribed the image, telling us that Lane had Septo Optic Dysplasia. One quick Google search displayed the words “blindness” (once again), “delays,” and “autism,” sending me into a state of hopelessness and despair. Without a doubt the worst feeling in my entire life. Later that day, Lane had one of many doctor’s appointments, and I vividly remember his doctor crying with me, wondering the same thing: why do bad things happen to good people?

Once his hormones were properly replaced at 2+ months old, Lane thrived in all areas and hit all milestones going forward. We were never told Lane’s visual prognosis, so we continued to hold on hope since I had heard many stories of delayed visual maturation in babies and toddlers. Unfortunately, his vision never developed, but I slowly gained acceptance. While I compared him to every other baby, a terribly sad and unproductive thing to do, his progress made me undoubtedly hopeful for his future. I knew that I needed to overcompensate in exposing him to everything, describe each tiny thing that happened around him, and identify every subtle noise in his environment. He is innately adventurous which really helped him.

Thankfully, his hormonal deficiencies, adrenal insufficiency, hypothyroidism, and growth hormone deficiency supplementations have become routine and secondary. He gets regular blood draws, biyearly checkups with his endocrinologist, and takes his daily meds, and we have never had an issue or scary situation (knock on wood). He attends 2 different preschools, one that is specifically for early childhood special education so he can be served by his Teacher of the Visually Impaired, and one preschool with typical peers. He is very age appropriate in his development, excelling in speech and language (he is an amazing communicator, great speller). He is absolutely hilarious, and with his love of vehicles and how things work, will definitely be a mechanic when he gets older. I am so proud of him.

Lane has inspired me in many ways, and most recently, to go back to school to become a Teacher of the Visually Impaired. I want to learn everything I can, and I want to assist other children and families like us. Our kiddos have so much potential, and I strive to provide them as many opportunities as their typical peers.