Monday, April 13, 2015

Experts

Recently I read this recommendation in an article about stillbirth research:

"The onus for fetal death registration and burial arrangements should default to the healthcare provider/institution"

Default. Really. Is this "service" to be offered to parents of older children who die? What about babies born alive who subsequently die? Will parents of adult children who die be offered this default service as well? What other parenting responsibilities should "default" to people unconnected to our family? No one offered to call Pete's parents to tell them the awful news. No one went to our apartment and told my mother, who was excitedly awaiting news of her first grandson's birth. No one from the hospital screamed and cried with her, and hugged her and tried to console her. Which staff member will be assigned to light his candle every birthday? Will they plan and book our annual birthday/grief trip for us in January? Who will decorate his tree? What about the countless other things I do because he is my son and I love him?

*We* are Toren's family. Whatever else has been taken, that never can be. How dare anyone even try. It took me a year to feel able to organize his memorial service but I'm so glad we did it the way we did and I cherish my memories of that day. I cannot imagine coming out of the fog of that early grief and realizing that faceless strangers had arranged his final experience in this life in some business-like and perfunctory way.

This idea that parents shouldn't plan their child's funeral and make arrangements for their child's body is yet another frustrating example of typically misguided attempts to "help" me with my grief. Frankly, these are not the things I need help with. What I needed help with at the time was being gently guided past the fear to see and and hold my baby, get family photos and spend time with him before saying goodbye. None of this happened, to my eternal regret. I'm left with the fear, two photos, and no memories. I also continue to need help with understanding grief, surrounding myself with supportive others, raising a bereaved sibling, and managing anxieties that have surfaced since his birth.

My own experiences, and those of all the bereaved parents I have met or heard from or read their blogs, lead me realize that the world has all kinds of ideas of what "stillbirth" is but few stop to hear the actual experiences of bereaved parents. It is particularly harmful when those who have an opportunity to use their powers for good, instead use their positions to perpetuate ignorance and fear, and promote uninformed viewpoints. It's even worse when it is inserted into legitimate research yet is not based in proper investigation and evidence.

When patients deliver their stillborn baby, of course they are distraught - that is a normal reaction. I defy anyone not to be grief-stricken in that situation. Rather than trying to stifle or prevent that normal reaction, what's needed is training in supporting patients in shock. No doubt that has got to be one of the toughest jobs out there. Could I do it? Who knows. But I didn't sign up for it. People who go into maternity care are also going into bereavement care, whether they realize it or not, whether they like it or not. The time spent with their baby after his or her birth is part of parents' "healing" and sets them on their path of grief and parenting. It has to be as right as possible.

I can't help thinking how backwards this all is. I wish the "healthcare provider/institution" had put this kind of energy into preventing my baby's death in the first place. That's what I really needed help with.

When it comes to stillbirth, if you don't talk to bereaved parents you're not getting the whole story. It's lazy at best, at worst, harmful. Anyone working in this field can learn a lot from talking to those who truly know what it's like when your baby dies at birth. It's not going to be a comfortable conversation for anyone, but it's a necessary one.



No comments:

Post a Comment