SOFT Stories – The Blind Men

The Blind Men: A Parable About Trisomy 18

By Pam Healey

The story of the Blind Men and the Elephant is a familiar one. Each blind man approaches the elephant from a different direction, places his hands on a separate part of the animal’s body and draws an individual, faulty conclusion about what he has approached. The elephant is a snake to one, a wall to another, and a tree to the third. They make conclusions based on what is familiar and is what is their narrow scope at the moment. They compare what they feel with their hands to what they know about and confidently generalize. Each is wrong. They fail to grasp the grandeur and complexity of the creature before them. The Blind Men and the Elephant is a parable about situations beyond a large, unique pachyderm and several small, visually challenged men.
Think about a child with trisomy 18. A mother looks into her baby’s eyes and sees recognition, delight and beautiful long eyelashes. Her father swings his toddler in the air and hears squeals and infectious laughter. Tickling brings delight. Both see a beautiful, responsive child who brings them joy. Her teacher watches her as she works to complete a task. She sees mastery motivation. Her physical therapist watches as she pretends to be asleep to avoid a task she does not want to do. She sees a child trying to take control of her world. Her grandmother holding her in the pool scolds her when she splashes water on the woman who has approached and stopped the playing. The two women see determination and agency. Her brother feels her take his hand when he is sad and needs comfort. He knows her compassion. Her sister holds her, and she looks up into her eyes and smiles. Her friend wheels her on the dance floor as the music plays loudly, and she throws her head back and laughs. He sees her as a companion sharing a social event. She even dances on her own with her mom. A child hands her a mylar balloon, and she finds her reflection, looks, touches the balloon and smiles. She reaches to pull eyeglasses from her friend. She crawls across the floor to grab what she sees. She throws a ball each time it is given to her. Those who observe her see curiosity, attention, mastery motivation and a sense of satisfaction.
Step by step she walks in her walker, holding someone’s hand or being held up. Those she walks with see determination. Eating out with family friends, she grabs the calamari, later spits out the clams and frowns when clams are offered again to check her interest. Those at the table see her as a child acting normally with definite food preferences. When her mother is busy making dinner, she crawls to the spice cabinet and empties it on the floor. Her mother sees perversity and clever attention getting. At her tenth birthday a teacher she has not seen in five years enters the room, and she smiles in recognition and holds up her hands. Her mother and teacher see memory, caring and connection. She loves being with her friends and at her birthday party she claps her hands in delight. As she gets older, she ignores girls, flirts outrageously with men and boys. Flank her with handsome young men, and she smiles broadly. Her mother knows she is dealing with an adolescent. Her grandmother holds her hand and speaks gently with her, and she looks up at her, smiling in recognition and contentment. There is important connection across generations that satisfies young and old.
A dog approaches, and she reaches out delighted to interact. She knows this is different and too good to miss. She is a normal kid who knows “happiness is a warm puppy.” She dresses in beautiful clothes, needs a large closet for her shoe collection and requires great attention to her long, curly, shiny tresses. She leaves her house looking like a model. Her parents want the best for her, know others judge her on her appearance and want what is perfect about her to be obvious to her harshest critics. Her perfectly normal chromosomes gave her beautiful hair, sparkling eyes, rosy cheeks, a winning smile and the capacity to give and receive love and affection.

But doctors, not her current doctors whom her parents engaged because they saw their child as they did, but earlier ones and others she meets along the way see her differently. At her birth one doctor asks her mother why she did not terminate the pregnancy, how could she be so irresponsible. The next day a doctor examines her and determines nothing can be done or should be done to support her efforts to survive. He sees her clenched fists, small chin, low set ears, later hears her heartbeat, soon reads the karyotype and believes her condition is”incompatible with life”. He puts a DNR order in effect without telling her parents. Two doctors arrive from another hospital eager to examine an infant with trisomy 18 and both examine her without washing their hands, changing to a white coat, speaking to her mother or even asking her name. Her doctor sends her home when she is a week old after several apnea episodes without an apnea monitor or oxygen. Before she leaves a cardiologist explains she has a VSD and PDA, but he also explains no one would operate on a child with trisomy 18. He says he will consider medicine in a few weeks at a follow-up appointment. Her doctors do not expect that she will survive until that appointment.
Much later, a doctor examining her in an emergency room far from home, ignores her mother’s information, does not look at the medical chart and list her mother offers and makes a cursory diagnosis that does not take into account her medical history. Still later, a doctor listens to her breathing, checks oxygen levels and other weakening body functions and despite survival well into her second decade, places a DNR order without informing her parents. Finally, in terms of insurance coverage, someone declares she cannot possibly have trisomy 18 because she is too old. She has outlived her diagnosis, so it must have been inaccurate, and she is denied further coverage based on her diagnosis. Later, when she is in her late teens, a visiting doctor exclaims she does not appear as if she has trisomy 18, but when asked about his experience, he admits he had seen only very young children with trisomy 18.

What does each doctor see? The focus of each is narrow: A karyotype, a cardiogram, a lack of language, little mobility, all understood against a short, bleak description in a text. The narrow focus determines the conclusion. They do not step back and see the whole child beyond trisomy 18. They generalize from an infant’s difficulties and do not see the possibilities.
People in the community also may not see the child for the delightful person she is. Some see a trach, tubes, a wheelchair, AFOs, short stature, a hand bent in on a wrist that does not support it, and they make a judgment about her humanity. They hear her sing and deem it meaningless sound. They stare, ignore her, and make comments that are hurtful to her siblings and parents. But the ignorance of passersby at the mall, or patrons at a restaurant or those sharing a sidewalk do not undermine her survival. The physicians that blindly look at an aspect of her diagnosis, compare it to a textbook and make assumptions, fail her. They do not stand back, observe without prejudice and see the remarkable possibilities. Like the blind men, their focus is too narrow to make them competent observers and qualified decision-makers.

All the behavioral observations reflect actual behavior of children with trisomy 18. All the examples of physician’s reactions presented in the text actually occurred through the years to different SOFT children with trisomy 18. This could also have ben written about children with trisomy 13 and their families, doctors, and accomplishments.

To see what the blind men did not see, click here and here.