Parent’s Perspective: How We Felt Learning Our Child Would Be Blind
When our daughter was born in September 2001 at 25 weeks gestation, weighing in at 18 ounces, we thought, “We’ll just get through this hospitalization, she’ll get bigger, and we’ll be home by New Year’s Eve (her scheduled due date).”
Little did we know that journey would involve five surgeries, lasers, pins to hold her eyes open during evaluations, and a desperate Learjet flight to frigid Detroit in January.
It was gestation week 33, eight weeks after birth, that the ophthalmologist came to do his evaluation. We just saw it as one more thing that needed to be looked at, like the many chest x-rays, blood gases, and other medical tests that were a part of our daily lives back then. When he started talking about “Stage 3 ROP” and “immediate need for laser surgery to try to save her retinas,” I felt like I was getting kicked repeatedly in the stomach for days. The anxiety was tremendously overwhelming and all-consuming of my thoughts. I was totally obsessed with, “Oh my God, what if she ends up blind?”
Instead of getting ready to take her home around her due date as other families were doing, we were facing the very real possibility of a life with blindness. That was the most shocking part of the hospitalization up to that point.
What didn’t help at this point was calling my mother in Washington State. I told her what was happening medically and said, “Mom, my daughter is probably going to be blinded by this condition.”
She said, “Oh, don’t think that way. Think positive thoughts and trust in the Lord.” Lovely. She was ignoring all medical reality I had shared and saying something completely nonsensical to me. Faith-based comments that ignored the facts might have helped others, but they irritated me and made me angry. I didn’t talk to her for weeks as the treatments and attempts to save any useful vision took place in two different states.
Our daughter resiliently endured two laser surgeries to try to stop the rapid blood vessel growth in her retinas, but the lasers had little impact. Then we heard “ROP with Plus Disease” and “high probability for stage four and bilateral detachment.” We were informed that the last thing we could do was fly to Michigan for vitrectomies to attempt to save whatever could be saved.
So I battled my insurance company to pay for a Learjet—fast. She needed medical evacuation services, an incubator, an in-flight nurse, and a respiratory therapist. The anxiety of having conversations with insurance people saying, “Your corporate plan doesn’t cover medical evacuation by Learjet,” all the while knowing that every day we wasted was another day closer to blindness, almost did me in completely.
Eventually, we made it to Detroit’s Beaumont Medical Center for two “lens-sparing vitrectomies” in two weeks. The stress of surgeries requiring general anesthesia for children is huge. When your baby weighs less than four pounds and her vision is riding on the outcome, well, you can just imagine how we were feeling. I find it hard to describe even now. Best phrase is probably total devastation.
It all led up to a conversation with the surgeon after the second surgery that confirmed the worst-case scenario: our daughter would have no useful vision because her retinas were detached due to stage 4 ROP. They had done “the best they could,” and “there’s a good possibility she’ll have light sensitivity.” I remember crying in the room with my husband after the surgeon left. I remember my husband’s words, “I’m saddened by the loss of potential.” I remember saying that they could still be wrong and that she’ll see more than they think she will. I went straight to denial. Then we went to the cafeteria for lunch with very red eyes. It was totally surreal.
We returned to California with a feeling that we had truly done everything we could possibly do for our daughter. We consoled ourselves with that as we prepared to take her home and to face the reality of raising a child who cannot see.
Up until this point, we had created a really good coping mechanism for ourselves. While at our baby’s NICU bedside together, we documented the 21-week NICU experience for our friends and family. We wrote the website in first-person narrative, as if our daughter was telling her own story. (www.babymilagro.org).
When we got to this point of blindness, I could write no more. The shock was too great. I couldn’t begin to express the grief, especially in the way we had come to find out the reality. It wasn’t one moment of a diagnosis or exam. It was months of receiving and digesting information, researching, agonizing, praying, enduring laser surgeries, and helping our daughter recover, hoping for good news and not getting it, then the flight to Michigan, pinning our last hopes on two amazing surgeons there, helping her recover again from surgeries, and again, ultimately, not getting any good news. It was such a terrible, emotional drain that ended in such irreversible loss. Eventually, I did write something, by imagining what she would say at that point if she could speak. It was a very, very hard thing to write, but I had to do it.
There was nothing that made me feel better those terrible months, except one beautiful thing, holding my baby. I held her, I cried for her, and I always promised her that I would never forget that she is first and foremost my child. That whatever else came, I would be there. I made that commitment to her repeatedly; it was the only thing that healed my aching soul. Years later, I read this sentiment written succinctly somewhere, “Never lose your child to the disability.”
Watching my husband hold her during those weeks, spending his birthday holding our recovering baby with an eye patch, is an image of total love and devotion that forever stays in my heart. He too made the same commitment to her, in spite of the loss, in his own daddy way.
We have honored those commitments to our daughter who is now a resilient, physically powerful kindergartner. For me, there is truly never a day without a flashback to those terrible months of gradual, painful loss—those months of wondering if this tiny child of mine would live or die this time under anesthesia—five times in two months we did this!
One day, about a decade from now, I will tell her this story. I can’t wait to hear what she’ll say to me on that day. It’s something I look forward to with a mixture of joy and dread.
Perhaps, it’s my obsessive nature. Perhaps, the scar of the experience was so deep that a lifetime of daily flashbacks is what I’m destined to have. In either case, in those moments of flashbacks, moments of grief, I go to my daughter and squeeze her. I cry silently for a few seconds then smile when she yells out, “I love you, Mama!” Just like back then, it is she who makes me stronger. I know this will be true for the rest of my life.
Mother of a six-year-old daughter with retinopathy of prematurity
San Francisco Bay Area, California