There is no patient more important than a patient who has experienced loss.
Every time I go to the hospital, it is with a heightened anticipation and dread that I do not know what the outcome will be. Today was no exception, even though I was there for a very different reason.
It has become increasingly important to me over time to educate people around me: to speak out, to not stay silent if something hurtful is said to me. Writing is one way I can do that, but it is much easier to write and collect my thoughts than to say the words out loud, in the moment. A few weeks ago, I had to draw on my own bravery when I agreed to speak on a parent panel to a group of Labor & Delivery nurses about being a patient who had experienced a loss.
Yesterday, my therapist gave me a small stone with a heart drawn on it in permanent marker. I turned the stone over and over in my hands during the session. I thought about carrying it with me today, to give my hands something to do while I spoke, but in the end left it at home.
I put on a loose shirt to hide my pregnancy, not knowing what other parents would be on the panel and what they had been through. I kept fighting tears on the drive, finally changing the music to the soundtrack of The Music Man - hard to cry with music like that in the background. I had only been to this part of the hospital - the Education Center - once before, so I made sure to arrive early. But by the time I got myself into the right parking garage, I was concerned about finding the room with only 15 minutes until the start of the session. I had previously gotten myself very turned around in the endless hallways of the enormous hospital, but this time I spotted signs that easily pointed me in the right direction.
The parent panel consisted of three mothers: one had given birth to twins in the middle of her 25th week of pregnancy, and lost one of her twins when he was 6 weeks old. The other had given birth at 31 weeks and her son lived for one day. And me. We each told our stories, with me going last.
I cried while talking, but managed to tell my story. Part of the purpose of the panel was to answer for the nurses "What could be done better or differently?" I had been told during delivery the first time that it was possible that I could be alone at the time that she was born - that no doctor or nurse might be in the room, because it could happen so quickly. I made very clear that the thought was terrifying to me, and that the nurse stayed with me and held my hand after I begged not to be left alone. I told them that no one - no doctor or nurse - had told me that I would lactate, and that it was a complete shock a few days after delivery and then I was trying frantically to suppress the milk. I told them that the second time, the nursing staff forgot to put the placard on my hospital room door that alerts other staff that the room has experienced a loss, and that the second time I felt that the nurses were less comforting; whether because I had just been there five months before, or because it was earlier in the pregnancy I did not know.
I told them what not to say. Don't tell me that the doctor can't be with me right now because there is another patient in active delivery. I didn't need to hear that; just tell me that the doctor will come as soon as possible. Don't tell me that I'm lucky I have other children at home; I wanted this baby. I also mentioned intake, and that I know it is probably unavoidable, but that I really didn't need to see other women who were checking in for a very different reason.
The coordinator of the group emphasized to the attendees: "There is no patient more important than a patient who has experienced loss. The mother who is complaining about her epidural, she can wait. These patients are your highest priority." It felt so good to hear her say that, especially after having heard several times during delivery that a mother in active labor was more important than me. One of the nurses was crying as she said that she felt like such a jerk for things that she had probably said to patients in the past, for not knowing that it wasn't the right thing to say, or not knowing what to say. But that was why we had the panel: to educate, so that other patients can have the care that the need at the worst moment of their lives.
We talked about what to say. I told the group that I don't know who would be the appropriate staff to say this, but to acknowledge to the parents by saying out loud, probably upon leaving the hospital "This will be the worst thing you will go through in your lives, and it will be very hard, probably for a long time." To remind them of the resources, and even if they can't bear to look at the list of resources right away (as I couldn't) to at least save the information so that they have it when they do need it. I also told the nurses that one of the best things that they can say to their patients is "I am here with you." You are not alone.
Only on the way home did I realize that I never said my girls' names out loud. The other two women talked about their sons, Adam and Lucas, but I never said Nelle or Iris. I regret that so much. It wasn't intentional, but saying their names brings me so much pain that I forget that saying their names gives them a voice.
"My silence is not going to be your comfort. My job is not to make you comfortable by dying on the inside and staying small and quiet."
-Brené Brown and Glennon Doyle