Saturday, November 21, 2015

Dear Medical Professional

photo credit: susan schmidt
inspired by Morgan's fabulous post, Metrics of Affection...

Dear Medical Professional,

I hope you understand what an amazing privilege you have. This year, in the United States alone, 6,000 babies will be born with Down Syndrome. And you, YOU, will be the very first person to welcome that baby into the world. Those 6,000 scared and confused families are not going to look to their friends or relations for answers...they are going to look to you.

You will be the one to share the news of their baby's diagnosis.  You will answers their endless questions about the implications of Down Syndrome. You will set the tone of that baby's first days and weeks of life. And you words and action will determine their child's reception.

Two and half years ago my brother Addison-sometimes-Henry was born. While we knew he had a CHD we did not have a prenatal diagnosis of Down Syndrome. There were many specialist present at his deliver. And when he was born they knew. But no one wanted to be the one to deliver the news. Although he was stable, they swept him away to the NICU before my mother could hold him and she still regrets the loss of those precious early bonding moments.

He was three days old when we received a definite T21 diagnosis. "I'm sorry." "This shouldn't have happened." Statistics. Complications. Referrals.

I'm ashamed to say, we spent the first week of his life mourning his diagnosis and the bleak picture the professionals had painted of his life. Not one doctor, not one nurse congratulated us. Not one of the many healthcare providers involved in his birth told us what an amazing boy he was and what a bright future he had. To them, his birth was a genetic mistake. And that is what they conveyed to my family, already scared in the reality of this unfamiliar territory.

I can't encourage you enough, if you have the opportunity to greet a child with Down Syndrome, please take time to express to the family how pleased you are for the arrival of their beautiful baby.

Please tell them their child's future is bright and the sky is the limit.

Please tell them they are living in a wonderful era for people with Down Syndrome.

Please tell them their child is more than a diagnosis.

Please be honest and tell them this will be hardest things they've ever done but their child will always be 110% worth it all.

Please tell them, for now, the pain and tears are real but they are nothing compared to the incredible joy the future will hold.

3 comments:

  1. I love this post so much. I hope that I can share this with my colleagues if you don't mind, because I feel the same way and having someone with a real life experience relating to this issue makes the concept of proper patient interaction so much more meaningful. As medical students, we stare into textbooks with tons of images of patients with disorders, and we soon assimilate the disorder as the person, instead of understanding that there's a person standing in front of the camera... They like chocolate milk, and classical music, they are mothers, architects, scuba instructions. Their disease doesn't define them... It's not one thing that defines you but a multitude of factors that makes us us. I'm sorry that the medical professionals did not act appropriately to your brother's birth. Siblings are the best <3

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    1. I can't believe I never replied to this comment! Of course I do not mind if you share with your colleagues...I would be honored. It is a message I wish every medical student would hear. Thank YOU for realizing a person is more than a diagnosis. It is a philosophy that will go a long way to making you a caring doctor and will bless your patients and their families so much.

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