Topic: Information Point: What Parents Have Said About How Not to Receive the Diagnosis Copy
ℹ️ Information Point
Read the following real quotes from families on how they received the diagnosis. Reflect on the lessons learned.
Be sure you tell couples in person or at a pre-scheduled time on the phone
“I will never forget how time seemed to stand still and my surroundings faded as her words “I’m sorry…” filtered through the phone. She continued to explain the amniocentesis had detected 47 chromosomes in some cells and 46 in others. (Mosaicism, but the meaning of that term would come much later). I remember very little of what else was said.”
Be sure you tell couples in person or at a pre-scheduled time on the phone
“I will never forget how time seemed to stand still and my surroundings faded as her words “I’m sorry…” filtered through the phone. She continued to explain the amniocentesis had detected 47 chromosomes in some cells and 46 in others. (Mosaicism, but the meaning of that term would come much later). I remember very little of what else was said.”
Be sure you talk to couples as you would like to be informed
“The doctor had our chart open in his hand. I will never forget the next words that he said to me. He said, “Your baby has Trisomy 21”. There was no preamble, no hesitation, or change in his voice. It was as if he told me I had a cold that would go away in a couple of weeks. I froze and at that moment, and for many hours later, I totally disconnected.”
Be sure you talk to couples as you would like to be informed
“The doctor had our chart open in his hand. I will never forget the next words that he said to me. He said, “Your baby has Trisomy 21”. There was no preamble, no hesitation, or change in his voice. It was as if he told me I had a cold that would go away in a couple of weeks. I froze and at that moment, and for many hours later, I totally disconnected.”
Be sure you give a balanced perspective
“The doctor told me that my child would be mentally retarded, ranging from mild to severe. She then presented a long list of health problems, starting with congenital heart defeats and running through the entire spectrum of issues that could complicate my child’s life. Finally, she did say that children with Down syndrome were usually very loving and caring. That is the only positive thing I remember her saying.”
Be sure you give a balanced perspective
“The doctor told me that my child would be mentally retarded, ranging from mild to severe. She then presented a long list of health problems, starting with congenital heart defeats and running through the entire spectrum of issues that could complicate my child’s life. Finally, she did say that children with Down syndrome were usually very loving and caring. That is the only positive thing I remember her saying.”
Make sure that everyone in your practice is informed of their decision once made
“The new practice we chose for care in Michigan was fairly large and I had to rotate doctors immediately…. each doctor that we met over the next month questioned our decision to continue the pregnancy. I finally had to tell them to put in my file in large letters that abortion was not an option for us.”
Make sure that everyone in your practice is informed of their decision once made
“The new practice we chose for care in Michigan was fairly large and I had to rotate doctors immediately…. each doctor that we met over the next month questioned our decision to continue the pregnancy. I finally had to tell them to put in my file in large letters that abortion was not an option for us.”