Thursday, April 23, 2015

Absurd

Absurd 
adjective 
wildly unreasonable, illogical or inappropriate; 
conceived or made without regard for reason or reality.

Examples:

Holding a support group for bereaved parents of babies on a maternity ward.

People thinking that remembering and talking about your baby, or just saying your baby's name, will upset you when it's the opposite that's true.

Someone asking you if you want to hold their living baby after your baby dies because they honest to goodness think it will help you.

People thinking that healthy newborn babies who die just before they are born were "not meant to be".

Care providers and funeral directors thinking that a baby, and a baby's body, somehow belongs to them, rather than to the parents.

People claiming to be "at peace" with the death of a baby. Easy to do when it's not your baby.

People sending you their happy crappy Christmas cards without even a small note indicating that they recognize and acknowledge that this is maybe a particularly tough time of year for you.

A deceased newborn baby being stripped of her clothes in the hospital and being sent to the funeral home naked. Would this happen to an older child? Or an adult??

At first, thinking it was ok to not name him, or to "save" his name for the next baby.

Friends and family not claiming Toren as a person in their lives after he died, even though they all claimed him the moment they found out I was pregnant.

A sweet and precious newborn baby being referred to as "it".

Someone going out of her way to come up to you at a community awareness walk and making an ignorant comment about your tshirt with your baby's photo on it, and it doesn't even occur to that person to offer condolences.

Parents who have nurtured a growing baby and delivered their child, both labouring and witnessing, and then doubting that they are parents.

A newborn baby's body not being treated with care and reverence by hospital staff.

The phrase "born sleeping".

Healthcare professionals thinking that we really didn't want to see or hold Toren, rather than understanding that what we actually didn't want was for him to have died.

Media articles needing to explain the impact of stillbirth on families in great detail, something they don't need to do when they are reporting on the deaths of older children.

Parents not receiving a birth certificate for their babies who were born.

Having to use the word "dead" when I am talking about one of my children.



Monday, April 20, 2015

Why We Run


It was a beautiful sunny day as Peter & I set out with our daughter for this year's Mini Sun Run. It's the smaller kids run that accompanies Canada's largest 10K road race. This is our 3rd year participating. It's quite a festive event, and perfect for families. Our daughter enjoys it. Every year as the SLC team prepares for the bigger event, she asks if we can do the Mini Sun Run. She knows it's for her baby brother.

This is not an easy thing for me to do. Other parents are pushing strollers, carrying younger siblings in carriers. I have a picture of my baby attached to my backpack. It feels awful but I do it anyway.

We run not just for our own baby, nor all the babies who have died. We run also for all the babies who will die. Tonight, tomorrow, in the days, weeks, months, years ahead. Families will be facing some of the same struggles our family has faced for the last 3 years. Bereavement support is important, but even more important is prevention. Awareness and prevention go hand in hand.

The other day our daughter made a little friend at the playground. The friend asked if she has any little brothers or sisters. The conversation went something like this:

Daughter: "I do have a brother but he died."
Friend: "He died?"
Daughter: "Yes."
Friend: "But where is he?"
Daughter: "He died."
Friend: "Ohhh...do you want to go on the swings?"

So sweet. I picture the little friend telling her parents and the parents being angry that we are talking about death at the playground (or at all). Except to us it's not "death", it's just our family. I worry that someone will say to our daughter: "Well, you don't really have a brother." Or: "My mom says you shouldn't be talking about that." Just as I worry that someone at the Mini Sun Run will tell me that my photo of my baby is inappropriate, unwanted, too sad. That my broken family is not welcome at an event for whole, happy families.

No one at a festive event wants to hear about babies dying. They don't want their good time ruined. Similarly, no one wants to hear about stillbirth when they're pregnant. Exactly when they need to be hearing about it. It feels awful, I don't want to do it, nobody wants me to do it. I do it anyway.

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.