This story comes from Dina, the author of the blog Frazzled Working Mom. Her older child has since been diagnosed on the autism spectrum and is legally blind; as a result, Dina has become an expert in navigating through the special education system to successfully advocate for him. She’s sharing the story of her son’s vision problems in two parts. Watch for part 2 coming soon. – Ann Z
I was delighted to be invited as a guest writer this week on the “Little Four Eyes” blog. I write my own blog covering topics about the juggle on managing work and life, and Ann and I met in the blogosphere over our common thread of having a child with glasses. Though my story starts 9 years ago when I easily conceived my first child, and I thought that things were too good to be true. I quickly learned that they were.
After just 5 months and 4 days of being pregnant, my son was born after a 2 hour labor, which the doctors were unable to stop. Weighing about a pound and a half, my son spent five grueling months in the newborn ICU. Like many preemies, he was diagnosed with “Retinopathy of Prematurity” – simply called – ROP. Preemies are at risk of blood vessels in the eye growing “out of control” and causing damage to their retinas. In some extreme cases, retinal detachment can occur.
When my son was two months old (though still many weeks shy of his due date), we enrolled him in a study and he qualified for surgery much earlier than when it was typically called for. The study would “test” out this early treatment, but only in one eye. It was a study we almost opted out of because of his overall precarious health. I will be grateful for the rest of my life that we enrolled him in it, and if given the chance, I would stand up in Times Square and shout my endorsement of clinical studies. My son would be completely blind had he not been enrolled in this study.
The eye that did not qualify for the study (“the control” treatment) ended up having a retinal detachment; he was transferred by ambulance to the only hospital in Boston with a pediatric retinal surgeon for reattachment surgery. Despite close follow-ups, the doctor didn’t call the surgery a failure until several months later, and he gave us a “last resort” to save his vision. We drove a third of the way across the country to go to the #1 ranked pediatric retinal surgeon in the country. A long shot, but our only shot. It didn’t work.
So, the decision to put him in the study was thus far the best decision of my life. And the treatment from the clinical study is now the standard treatment; my son’s doctor told me that there is now a much lower incidence of blindness in pre-term babies because of this. So while my son lost his sight in that eye, he at least helped to save others who followed behind him.
My son is near-sighted in his “good” eye, and he wears glasses every waking moment to protect that eye as well. He wouldn’t be who he is without the glasses. They’ve been a part of him ever since he learned to walk.
He is considered legally blind, which makes life hard in many ways. But at least he can see out of one eye. I know a family from the NICU who didn’t participate in that study, and their child is completely blind. I haven’t talked to them in years, but I think of them frequently.
So while I wish we didn’t go through any of this, and our whole pre-term saga has many other layers to it, it has at least made us all stronger for having been down this windy road.
You can read more of Dina’s writing at Frazzled Working Mom, which explores topics covering work/life balance and offers tips for handling the chaos in life.