Tell Your Story

Let me tell you what I wish I’d known
When I was young and dreamed of glory
You have no control:
Who lives, who dies, who tells your story?
-From ‘Hamilton’

For the third time, I appeared before a group of hospital staff to tell my story of being a patient in Labor and Delivery who would not be taking my baby home.

My previous two experiences were with much smaller groups, part of training classes for new staff.  Today was with a much larger group of close to 30 people, in preparation for expanding the SHARE program into another hospital.  I always start my story in the same way, “My first two pregnancies were uneventful.  During my twenty-week ultrasound with my third child, we found out that something was wrong.”  Even two and a half years later, my voice still breaks and I start to cry when I say “And the doctor couldn’t find a heartbeat.”  But, I know that the rawness is needed.  Part of the intent of this education is to help staff understand what it is like to be the patient, in those awful minutes, hours, and days spent in Labor and Delivery.

How important it is to say to the patient “I am here with you” rather than “I am here for you.”  I am here with you during the worst moments of your life.  I will hold your hand and not leave you alone.

How not to say “Well, at least you have other children at home.”  Because I wanted this baby.  She was one of my children from the beginning.

That if a patient comes in to deliver a living child after loss, to not ignore the past experiences or pretend that they didn’t exist.  Everything isn’t automatically fixed with the birth of a healthy baby.

Ask.

I talked about how I didn’t look at either Nelle or Iris, and I do not regret that decision.  I  knew that at 21 weeks and 16 weeks, they wouldn’t look like the image I had in my mind of my babies.

I saw some of the staff wiping away tears while I talked.  The SHARE coordinator reminded the staff that when they are taking care of a loss patient that they become part of that patient’s story.  How true.  And now perhaps I am part of their story, as they move forward to care for future patients – that they remember something that I said.  One of the attendees came up to me after and gave me a hug, thanking me for sharing my story.

After talking about Nelle and Iris, I am always drained, but know that hearing the story will help the staff provide better care.  It is an honor to speak of them.  It is how my daughters can continue to have an impact.