Through the Eyes of the Blind: My Child Born Blind

I'm really not sure how to start writing this. After all, I'll likely never know what it's like to be blind, but I expect I'll gain a better understanding as I watch my daughter grow.

Scout (her nickname) was born July 29th, 2021 at 10:44pm. Her due date was September 10th. I went into labor the day after my family and I had gotten home form a thirty-hour road trip, which, in retrospect, was SO fortunate! At the hospital, the doctors were able to stop my labor, but when they learned may water had also broken, they resolved to delivery my baby before the week was out due to the risk of infection. I sat in the sterile sheets, alone in the middle of the night, waiting for my husband, but he couldn't leave our one-year-old home alone. My swollen belly was wrapped with monitors and leads and my only comfort was that my baby seemed healthy inside me. I didn't know then that I was to have another girl. What I did know was that this baby was coming in a matter of days and that he or she would be taken from me at the moment of their birth, and that alone broke my heart.

The pumped me with antibiotics and steroids to help the baby's lungs develop, and kept me in bed until that Friday, when it was time to induce my labor. In almost fourteen hours, my daughter was born, small but crying powerfully. They let me hold her for a moment before whisking her away to the NICU, and I couldn't believe how tiny she was.

The doctor told me if I had an unmedicated birth, I would recover more quickly, so I elected to labor without pain killers so I could hold her sooner. I remember being so exhausted by the end of it that I would fall asleep for the few seconds of reprieve between contractions. But nothing was going to keep me from getting to my baby as soon as possible.

For two hours, I sat and dozed, waiting and watching the time slip by until I would be allowed downstairs. And, finally, they took me.

She was just over four pounds, her pink skin covered in wires and monitors with an IV stuck to her hand and a feeding tube jammed down her nose. But she was strong enough to be held, and for that I was undeniably grateful. My husband had stayed with her the entire time so that she was not completely alone with these strangers.

She stayed there a month, learning to breastfeed and keep herself warm, and I stayed with her. I kept questioning what it meant to be a good mom. If I left her for even a couple hours, would she feel abandoned? Would it scar her for life to not have me with her after everything that's been done to her? And what about my other daughter, who, all of a sudden, had to wake up without me and go to bed without me when I was all she ever knew for a year and a half? Because of Covid-19, she was not allowed past the reception desk of the hospital, so I could only see her outside for a few minutes at a time. It was in those moments I felt the urge to cry the most.

Eventually, though, as I felt more comfortable with the nurses, I developed a balance where I would go home in the evenings to feed my daughter dinner and get her in bed. Once my husband got home from work, usually around eleven or twelve at night, I would go back to the hospital. And then, FINALLY, we were able to bring little Scout home.

It wasn't until a dreamy but sleep-depriving month later that I noticed something wasn't quite right. It was a Sunday evening, nearing the end of September, when I realized Scout's left pupil was white. With the light shining into it at the right angle, it seemed like I could look all the way inside and see the individual blood vessels crisscrossing their way through. This was not the first time I'd noticed this, but I figured it was nothing because the medical staff who had watched over her for four whole weeks had never mentioned anything. I was in denial that anything else could go wrong. Clearly they could. This time I decided to google it and the first thing to pop up was retinoblastoma: Cancer.

In a tearful frenzy, I ran to my husband and fumbled out the words "we need to go to the emergency room." I had no idea what to do! I'd assume if it was cancer, the faster you get it looked at and diagnosed the better, right? So I was going to have it looked at that night!

I called my dad to come watch our older daughter so we could go, yet again to the hospital. Once there, the triage nurse told us he'd never seen anything like this before and didn't think it was anything special or important. He used the exact words, "I'm sure it's nothing."

I knew it was something.

We waited for six hours before finally giving up and going home, the emotion and panic from that evening dissipating from exhaustion. First thing in the morning, I called Scout's pediatrician and got her in that afternoon for an appointment. From there, we were sent to an ophthalmologist who was as dismissive as the triage nurse, saying "most parents think they see something in a photo and it turns out to be nothing. That's probably what this is, too." I almost rolled my eyes at her because I knew this was something. And after a good long look, she did too. She then referred us to a specialist at the state's leading children's hospital, who referred us to his colleague, a retinal specialist. Finally, we had some idea of what was going on. We entertained numerous diagnoses, some terrifying like Norrie and Coat's Disease, to a bit more manageable, like FEVRE and retinopathy of prematurity. One thing we knew for certain was that it wasn't cancer. A part of me was dismayed. At least a retinoblastoma is usually 100% curable, where as some of these other options are progressive and hardly even treatable.

What we did know was that her left eye had suffered a complete retinal detachment, which was what I was seeing under certain lighting. Her right eye had the beginnings of another detachment, so the specialist decided to operate.

After three surgeries and multiple exams under anesthesia, we are praying her retina will reattach fully and heal itself. Her left eye likely won't be so lucky. In fact, the specialist told us she would be lucky if it survived until she was ten. We would probably have to remove it within the next couple year.

My little baby girl was going to lose her eye.

My stomach turned and I forced myself to maintain composure.

"But can she see out of her right eye?" We would ask every time and we would always get the same reply.

"I don't know."

But finally, the specialist determined that, if she can see anything at all, it would be light, but her vision will be so impaired she will need to learn Braille. It came like a punch to the gut. Our daughter was blind. And the way the doctor said it implied that she had thought she'd already made that clear.

Our daughter is blind. She will never know her mother's face. And we still don't know why.