American Action Fund for Blind Children and Adults
Future Reflections
       Fall 2023      PERSPECTIVES

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On Medical Interventions and Being a Regular Kid: How We Decided Not to Treat Our Daughter's Blindness

by Jamie Principato Crane

Jamie Principato Crane sits on a log with her husband and their two children.From the Editor: When doctors discover that a young child is blind, they usually go into high gear, doing everything possible to give the child vision. In this article Jamie Principato Crane reflects on her own experience of blindness and explains her decision to refuse surgery that might improve her daughter's sight. Jamie has worked for a variety of NASA space grant programs, designing particle astrophysics experiments. She was a program manager at Google before leaving to stay at home with her two children. Currently she is establishing a startup, developing a stroller and accessories for parents who primarily use public transit and rideshare services to travel with their babies.

My seven-month-old daughter Selene was born blind. Her cause of blindness is a rare, unspecified genetic condition that causes the cornea to be cloudy and, as far as we know, doesn't affect any other part of the eye. I share her condition, though no one else in my family has it, including my two-year-old son.

This condition only affects the cornea, the thin front layer of the eye that lets in light. Because other circumstances that lead to corneal cloudiness are relatively common, many professionals in ophthalmology believe that the obvious thing to do in a case like Selene's is to perform a cornea graft or transplant. Remove the cloudy tissue and replace it with clear donor tissue.

In the hours following Selene's birth, we met at least half a dozen professionals who told us how simple this procedure would be. The most senior among them even assured us that they could do this surgery for our daughter at three months of age, and that sooner would most certainly be better.

"We do so many of these procedures," they tell us.

I know. I've had seven.

"The success rate has improved over the years," they tell us.

I know. It's about 25 percent. That's a 1 in 4 chance that clear vision will last for as much as a year. Then what?

"If repeated grafts fail, there are prosthetic corneas we could try instead."

I know. I have one, and I am still blind.

And I have an excellent life.

As a small child, I was very limited by a medical model of blindness that frightened and compelled my parents to pursue repeated attempts to "save" my vision. I have vivid memories from early toddlerhood of operating rooms, slit lamps, and eye patches. Adults scolded me if I tried to run on the playground, play catch, or dig in the sand. This scolding was less about protecting the poor blind baby and more about protecting the delicate, precarious transplanted tissue they believed would give me sight this time, if it just healed the right way without being disturbed. I used as many as four different eyedrops, as often as four times a day, and I learned early to worry about never missing a drop.

The grafts failed repeatedly, but the doctors we saw touted their great success. "This one lasted eighteen months!" they would boast, showing me off to colleagues as if I were a science fair project. This bothers me now more than it did back then. At the time I was just a scared child who didn't want to go to the hospital anymore. But my parents kept trying, encouraged by the professionals who said success rates improve with age. They promised my parents that they were doing what was best for my development.

The repeated surgeries caused me to develop glaucoma. Controlling this condition required many more surgeries and medications. Glaucoma caused constant eye pain and headaches. I faced further limitations on my activities to help keep my intra-ocular pressure low, and I experienced vision loss that no amount of medical expertise can reverse.

I want none of this for my daughter.

We were seen by some of the most accomplished experts in pediatric ophthalmology, a feature of where we live rather than an intentional search of the best doctors in the field. Whenever you need to make medical decisions, for yourself or for a family member, it's important to consider whether the benefits outweigh the risks. In this case, the benefits of gaining sight as early as possible in life are clear. However, the risks, to name just a few, include painful glaucoma, a need for repeated surgeries, scarring, infection, complications from anesthesia, complications from prolonged use of steroids after surgery . . . the list goes on. I am all too familiar with most of these ramifications.

When I asked the doctors about the risks of doing nothing, they looked confused, as if no one had ever asked them this question before. After a lot of pressing and an awkwardness that made me think they weren't sure how to answer me without saying something I'd find offensive, we understood that the only risk of doing nothing was that Selene's eyes would remain exactly as they are. She would remain legally blind.

It is important to remember that, for many in the field of ophthalmology, blindness is regarded as the worst possible outcome—the end stage of something analogous to a terminal illness. Many ophthalmologists don't know what to do with patients once blindness is imminent. They struggle to talk about quality of life as a higher priority than sight. How can you have one without the other? We in the National Federation of the Blind know that quality of life does not depend on sight.

When the doctors left, I told my husband in private that I don't want them to lay one finger on our baby girl with the goal of "fixing" her. She is not broken.

Fast forward through my own childhood to the time when my mother gave up on restoring my vision. I wish I could say it happened because she learned that it is respectable to be blind. She didn’t, and she could never bring herself even to use the B word to describe me. Nor did she embrace the social model of blindness that is a cornerstone of our philosophy within the NFB. But tragedy and loss were hitting our family hard, and our priorities had to change. The decade-long “fight for sight” ended.

And my childhood began.

Running and climbing on the playground at recess, discovering a love for soccer and fencing, going on long trips and overnight stays with friends without carrying along a portable pharmacy—all these doors were open to me at last. Most importantly, without the baggage of the medical model, there was room in my life for the skills and philosophies that would help me live the life I want.

I spent my formative teenage years learning about the NFB and what we do and believe. I learned to use a cane, a tool my parents and I had previously rejected as a symbol of failure in our fight for sight. I embraced assistive technology, and I sought out blind peers and role models for the first time. My life didn't suddenly become easy, but my confidence in what I could do with it grew and grew. Blindness was no longer the terminal stage of a disease that defined me, and I could embrace it without fear.

For a short time after baby Selene came into the world, my husband and I felt fear. The days following childbirth are incredibly vulnerable. We were exhausted and overwhelmed. I struggled with my own recovery and the postpartum rollercoaster of emotions so many women face. As the list of specialist referrals, recommended tests, and possible prognoses grew, so grew our anxieties about our daughter's future and the future of our family. The medical model of blindness was back with all its baggage at the door. Even with all my lived experience as a thriving blind woman with an excellent life, I didn't have it in me to turn it away.

But at this stage in my life, the social model of blindness and all the truths about blindness that I've learned over the years have solidly taken root. After every conversation with a doctor, after every wave of worry with my husband, the cognitive dissonance would well up and the contradictions would appear. I have a great life. Why shouldn't she? Blindness doesn't hold me back. Why should it hold her back? I'm not broken, or sick, or incomplete, and neither is she.

We discussed our priorities for all of our children. We want them to be active, healthy kids. We want to go on adventures and explore the outdoors. We want our children to have rich social lives and to learn to be leaders, creators, and problem solvers. We want to foster their independence, and we want them to grow up with choices and the skills to direct their own lives.

After we spelled out these priorities, it became clear to us that any attempt to eliminate Selene's blindness now would drastically limit these outcomes for her, just as it had for me. But if we accepted her blindness and focused instead on raising her with good blindness skills and a community of strong blind role models, we could achieve all of these outcomes for her, and many more.

And with that realization, the fear once again faded.

Am I against any treatment or cure for blindness?

Of course not. I am married to a sighted man, and I have a sighted son. I think anyone would agree that perfect sight is incredibly convenient. If it can be obtained conveniently, with minimal physical and emotional cost, that's fantastic. But I believe that medical professionals frequently understate the risks of treatment, many of which I shared here, and lead patients falsely to equate loss of sight with loss of meaningful life. That's not okay!

Am I refusing any and all medical intervention for my daughter?

No. Actually, we see a pediatric ophthalmologist regularly. She's fantastic, and she understands our decision not to treat Selene's blindness. She's happy to monitor how her eyes are developing and help us stay ahead of anything we might actually want to treat (such as glaucoma, which is often painful.) Also, we are very curious people. Very little is known about our condition, and we would like to help our hospital and others understand it better.

Will I ever change my mind about treating Selene's blindness? Probably not, but she might have a different perspective someday. My eyes are so damaged from the repeated surgeries, scarring, and resulting glaucoma that I don't have many options anymore if I wanted to try a new way of gaining sight. I can't even wear cosmetic contact lenses if I ever wanted to make my eyes look more symmetrical. I don't want either of those things for myself, but it's nice to have choices. Maybe someday Selene will want something like that for herself, and maybe I am preserving her later options by not choosing for her now.

Is there anything about Selene that still worries me? You bet! I don't think mothers ever get to not worry about their children! But I am not worried about her blindness. Sometimes I worry about what other people will think if they know I had the choice to try to give her sight and I said no. I worry about being pressured by ophthalmologists to allow radical, invasive things to be done to my daughter (or to me!) Once I stayed up all night googling myself into a panic because I thought our doctor could get child protective services involved if I refused treatment. But I am not worried about the childhood or the life my daughter will have as a blind person. She has a place within an amazing community of blind leaders, thinkers, and creators. She will grow up knowing that blindness does not hold her back, and that she can live the life she wants.

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