small, a doctor in CHOP’s PICU told us that she loved Bella’s little mouth and would find an oxygen mask that fit just perfectly. Not only did they see her beauty, but they also recognized her potential and wanted to help her reach it. While other doctors were saying there was no hope, CHOP physicians were saying to just give her a chance.
Almost seven years have passed since Bella’s birth. Nearly seven years since we received the crushing diagnosis of Trisomy 18. Virtually seven years since those words “lethal diagnosis” and “incompatible with life” were coldly spoken by the doctor and burned into our hearts. Was it a slip of the tongue? Maybe the doctor just didn’t think before he spoke. Maybe he just didn’t realize the huge impact his words would have. After almost seven years, they still disturb me and echo in my mind as if they had just been spoken.
As the mother of seven children, I know how powerfulwords can be, and I tend to obsess over which words I use in various situations with my children. “Pleasant words are like a honeycomb, sweetness to the soul and health to the body” (Prov. 16:24). Words can affirm, encourage, and inspire, or they can frustrate, degrade, and build anger. Through the years I have known what it means to my children when I encourage and validate them with positive words. I have read parenting books about how our words will have lasting effects on our children, and I regret the times I have carelessly spoken without thinking. I know all of us have said things we wish we hadn’t.
These doctors, however, seemed to have no remorse over the toxic words they used. Maybe they had taken the line right out of a medical book or their medical school professors had used these words.
When Bella was three and a half, she was hospitalized for pneumonia. A few days into her stay, she was sitting up in her bed, playing with her toys. A young physician who had been assisting in her care stood at the foot of her bed. He was watching Bella, and she looked up at him. She kept smiling and giggling. I looked over at this tall, athletic physician and was surprised to see tears running down his face. When I asked if he was all right, he said, “I didn’t know kids like Bella existed. All we were told in medical school was kids with Trisomy 18 never lived. I feel so lied to.”
I wish that doctors, like parents, would choose their words more carefully and understand that when they say “lethal diagnosis” it can too often lead to deadly outcomes. “Death and life are in the power of the tongue” (Prov. 18:21). God Himself instructs us to use caution with the words we choose to use.
Rick and I are not alone in this experience. During thepast seven years, I have become immersed in the world of Trisomy parents and their children. I frequently talk or correspond with parents. I have read every article and watched every video I could find. What I have learned is that doctors always refer to Trisomy 18 infants as having a “lethal diagnosis” and always say that the children are “incompatible with life.” All the Trisomy 18 parents I have spoken with have faced this same battle. The only place where we did not hear Trisomy 18 referred to as “lethal” or “incompatible with life” was at the Children’s Hospital of Philadelphia.
When parents hear the word lethal , it places fear into their minds and gives them a sense of hopelessness. When we watch the nightly news, we hear about people dying from lethal attacks, lethal weapons, and lethal drug doses. In all those situations, the people are already dead, and we are learning about what lethal thing killed them. To refer to a child who is still alive as having a “lethal diagnosis” is grossly inaccurate; many children who have Trisomy 18 survive and thrive, even into adulthood.
The tongue of the wise dispenses knowledge,
but the mouths of fools pour out folly.
A gentle tongue is a tree of life.
(P ROV . 15:2, 4)
Moreover, any
Almost seven years have passed since Bella’s birth. Nearly seven years since we received the crushing diagnosis of Trisomy 18. Virtually seven years since those words “lethal diagnosis” and “incompatible with life” were coldly spoken by the doctor and burned into our hearts. Was it a slip of the tongue? Maybe the doctor just didn’t think before he spoke. Maybe he just didn’t realize the huge impact his words would have. After almost seven years, they still disturb me and echo in my mind as if they had just been spoken.
As the mother of seven children, I know how powerfulwords can be, and I tend to obsess over which words I use in various situations with my children. “Pleasant words are like a honeycomb, sweetness to the soul and health to the body” (Prov. 16:24). Words can affirm, encourage, and inspire, or they can frustrate, degrade, and build anger. Through the years I have known what it means to my children when I encourage and validate them with positive words. I have read parenting books about how our words will have lasting effects on our children, and I regret the times I have carelessly spoken without thinking. I know all of us have said things we wish we hadn’t.
These doctors, however, seemed to have no remorse over the toxic words they used. Maybe they had taken the line right out of a medical book or their medical school professors had used these words.
When Bella was three and a half, she was hospitalized for pneumonia. A few days into her stay, she was sitting up in her bed, playing with her toys. A young physician who had been assisting in her care stood at the foot of her bed. He was watching Bella, and she looked up at him. She kept smiling and giggling. I looked over at this tall, athletic physician and was surprised to see tears running down his face. When I asked if he was all right, he said, “I didn’t know kids like Bella existed. All we were told in medical school was kids with Trisomy 18 never lived. I feel so lied to.”
I wish that doctors, like parents, would choose their words more carefully and understand that when they say “lethal diagnosis” it can too often lead to deadly outcomes. “Death and life are in the power of the tongue” (Prov. 18:21). God Himself instructs us to use caution with the words we choose to use.
Rick and I are not alone in this experience. During thepast seven years, I have become immersed in the world of Trisomy parents and their children. I frequently talk or correspond with parents. I have read every article and watched every video I could find. What I have learned is that doctors always refer to Trisomy 18 infants as having a “lethal diagnosis” and always say that the children are “incompatible with life.” All the Trisomy 18 parents I have spoken with have faced this same battle. The only place where we did not hear Trisomy 18 referred to as “lethal” or “incompatible with life” was at the Children’s Hospital of Philadelphia.
When parents hear the word lethal , it places fear into their minds and gives them a sense of hopelessness. When we watch the nightly news, we hear about people dying from lethal attacks, lethal weapons, and lethal drug doses. In all those situations, the people are already dead, and we are learning about what lethal thing killed them. To refer to a child who is still alive as having a “lethal diagnosis” is grossly inaccurate; many children who have Trisomy 18 survive and thrive, even into adulthood.
The tongue of the wise dispenses knowledge,
but the mouths of fools pour out folly.
A gentle tongue is a tree of life.
(P ROV . 15:2, 4)
Moreover, any
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