Sharing Their Stories

2019-04-18 Sharing Their Stories

When an invitation comes up to speak on parent panels at one of the local hospitals, I always volunteer.  These panels are part of the SHARE program and educate hospital medical staff on how to care for patients like me, dealing with the death of their child.  The staff – nurses and techs usually, from both Labor and Delivery and Mother-Baby – go through the “information” part of the class first, learning about the bereavement program to support parents, but then the parents are invited into the room to speak and tell their stories.  The stories we share communicate the experience in a way that no Power Point can.

Today was my fifth time speaking on a parent panel.  Every time I share my story, and the story of my daughters, I always say something different.  This time, I wanted to prepare a bit so that I wouldn’t leave anything out that I thought would be meaningful.  I practiced my words in the car on the 30 minute drive to the hospital.  I tried to picture myself speaking at an event of The Moth, and what would I say in a live storytelling event.  But then I began crying, so had washed away all of my makeup before the morning had really started.

Of the three mothers speaking, I was the only one who had done a panel before, so I was fairly certain that I would be asked to speak first.  I carefully opened the pack of tissues in front of me and removed several so that I would be ready.  There were ten staffers – all women – tightly encircled in a rectangle of tables in a small conference room, by far the most intimate setting in which I had spoken.

I have written about my daughters so many times over the years.  I wrote about their birth stories just days after being released from the hospital.  But for writing here, today, I thought that I would retell it in the same way that I spoke to the panel (as best I can recapture my own words) so that it is all “in one place.”  I looked into the faces of the women as they listened to me, and watched their tears, and knew that they could feel what I was telling them.

I had two normal, uneventful pregnancies and it was during my mid-pregnancy ultrasound with my third child that we found out that our baby was growth restricted.  I had an amniocentesis done on the spot, but the results came back and didn’t show anything – I had no infections, and all chromosomes were normal.  So a follow-up appointment was scheduled to do another ultrasound with Maternal Fetal Medicine to see if we could determine what was going on.

Before that appointment, I had a regular prenatal visit with my OBGYN.  I found out during that visit that my daughter had no heartbeat.  My husband was not with me, as it was supposed to be a routine appointment, so I had to call him at work and tell him that our daughter had died and that he needed to come to the hospital.

Labor was induced and it took 26 hours.  I had an epidural, but it was awful – I couldn’t sleep or anything during that time.  Toward the end, I was told that the doctor might not be in the room, because some other patient would be more important than me.  I was also told that the nurse might not be in the room, because it could happen so quickly.  I begged the nurse not to leave me alone.  She sat by my side, and held my hand.

I began to vomit uncontrollably, and the nurse knew to run and get the doctor, so he was there when our daughter was born.  And her name was Nelle.

My placenta didn’t detach, so then I had to have a D&C which extended my hospital stay.  When I was being discharged, another doctor came in and she said “You have two other sons at home?  Go and snuggle with them.”  But I was leaving the hospital without one of my children – without my daughter.

No reason was found for why she had died, even after more testing, and two different doctors told me that it would be fine to become pregnant again right away.  And I did become pregnant.  I was terrified every day, without knowing what had happened, that something would happen again.

At my 16-week prenatal appointment, I insisted that an ultrasound be done, rather than use a doppler.  The doctor asked if I had any reason for concerns, and I said no – but because my experience with the doppler before had resulted in a heartbeat not being found, I would just prefer the ultrasound.  He brought in a machine and after a few minutes, he told me that my daughter had no heartbeat.

I was admitted to the hospital again and labor was induced again.  I remember sitting in the hospital room thinking “I cannot believe that this is happening, not even six months later.”  Labor was mercifully shorter, only fourteen hours.  Her name was Iris.  We don’t know what happened – we don’t even know for sure that the two losses are related

In the things you never think you will have to say as a parent, it includes “I need you to go pick up our daughter’s ashes at the funeral home, because I did it last time.”

It took me a year to go to my first SHARE support group meeting.  I felt like no other parent could feel what I was feeling and I felt very much alone.  I only went to one meeting and I didn’t go back.  It wasn’t until I became pregnant with my rainbow baby – my second rainbow baby, because Iris was my first rainbow – that I started going to Sharing HOPE for parents who are pregnant after loss. 

And that group got me through the worst nine months of my life because I feared every day that something would go wrong.  Even the day before my c-section, I still didn’t believe that we would bring our baby home.  But she’s 20 months old now, and we are so grateful that she is here.

One of the best things you can say to a patient is “I am here with you” instead of “I am here for you.  “For” implies that you are going to do something, and there is nothing you can do.  But you can be with that person.

My older kids were 6 and 3 at the time.  The 3-year-old didn’t understand at the time, and the 6-year-old just barely.  For a long time, I found it hard to say their names out loud.  But now we celebrate their birthdays by going out to dinner and having cake.  We participate in SHARE events as a family.  I have things around the house to honor them, like a family photo after my rainbow baby was born that I had digitally altered to include silhouettes of my other daughters, displayed prominently in our living room.

I chose not to look at either of my daughters after they were born.  I had in my mind what a baby should look like, and I knew they would not look like that.  I also never looked at the photos taken by the hospital.  And I don’t really regret that decision – it was the right decision at the time.

What can you say to a patient about to deliver a baby (normally) and looking at her chart, you can see that she has had a prior loss?  She didn’t forget that child she lost – you are not going to “remind” her of that baby.  Pregnancy and birth announcements are still hard for me, so the best thing I can usually say is “I hope that your baby arrives safely.”  So that can be something to say – I am going to help your baby arrive safely.  This time will be different.

The care that you provide to us as patients – you have no idea of the impact that it will have later, and how much it will mean to us.  We will always remember those moments, because it is happening to us on what is otherwise the worst day of our lives.

(Note: some of this was me talking in narrative, and the others were responses to questions I received.)

(Note to self: I love participating in these panels because it is so cathartic.  But I leave feeling emotionally drained and heavy.  I spent the rest of the day on the phone and in meetings.  Next time, I need to plan to not work for the rest of the day and focus on my own self-care.)