The Do Better Letter

My son was diagnosed at birth with Down syndrome. It wasn't a great experience. Here's how I let them know.

This one is a throwback to fall 2019. It took me awhile to process the experience of my son’s diagnosis, but once I did, the courage to express it and HIT SEND poured forth.

Fall 2019

Dear Administrators of Christ Hospital,

If you have children, what were you told on the day they were born? Most likely, congratulations.

I delivered my son Luke at your hospital on July 25, 2019. He was given a preliminary diagnosis of Down syndrome at birth. We weren’t told congratulations. We were told, “I’m sorry” by your medical team and the attending neonatologist.

Would you have wanted to hear that when your child was born? No.

I am writing to ensure that no other family that delivers a child with any type of medical diagnosis at your hospital hears the words “I’m sorry.”

I understand telling families about any kind of diagnosis is a fragile endeavor, but “I’m sorry” should not be in the lexicon. Again, I don’t want any family that delivers a child in your hospital to EVER hear those words. Those first few moments of a child’s life are so precious. Poorly chosen words can easily steal those moments and leave a lasting impact.

With those words, your staff is perpetuating the stigma that somehow my son’s life is “lesser”. With those words, they tried to take some of our joy. My son will not be loved any less because of his diagnosis. He is a beautiful gift and continues to show us there is nothing to be sorry about.

In this case, I am the one who is actually sorry. I’m sorry my husband, my son and I had to hear that. I’m sorry that I chose to deliver at your hospital where I never expected to have that experience. I’m sorry for any family that’s heard those words before me.

Your vision is “to be a national leader in clinical excellence, patient experience, and affordable care.” You have work to do on the patient experience front if you want to achieve that vision. I am grateful for the quality of care we received while we were there, but not the patient experience.

Please invest in training for your staff and do better, for the sake of your hospital and your patients. Do better for Christ’s sake.

Sincerely,

Emily Kendall

I got a call from the head of patient experience who listened and promised to look into more training. Unfortunately, a friend of mine had a similar experience with the same doctor a few months later. There’s work to be done.

I was about 10-15 minutes post delivery after we received the diagnosis. I remember looking at that doctor and saying, “so?” It took me awhile for everything to sink in, and there were a lot of emotions. Deep in my core I knew that it’s the world that is hard, not my son’s diagnosis.

If you know someone who has received a prenatal or at-birth diagnosis, I understand it is tricky to figure out what to say. Here are some resources to reference for guidance. Please note these are related to Down syndrome but some of the guidance about approaching a friend or loved one who’s received a diagnosis is pretty universal. I am happy to discuss as well, please feel free to email me.

Your Loved One is Having a Baby with Down syndrome this is from the National Center for Prenatal and Postnatal Resources at the University of Kentucky's Human Development Institute

Understanding a Diagnosis from the National Down Syndrome Society

National Down Syndrome Diagnosis Network Resource Library - includes a list of beautiful children’s books

I’ve also written about some experiences with my son previously. Here are links to those pieces:

Fat Butt - an encounter with a well-meaning (!?!?) nurse after my son was discharged from the NICU

Breastfeeding Success - recent piece published in Business Insider about breastfeeding my son after a neonatologist told me not to expect much

As always, thank you for being here. Your support keeps me going (and coffee, and wine, and the fact it’s Friday and pizza night - no cooking, no dishes!)