It’s hard to believe that there is actually a dark side to pregnancy loss organizations. At least some of them and to know that a dark side exists, damages trust. At a time when families need love and support the most, some are being turned away and they don’t even know it.

It’s almost similar to comparing losses. Comparing loss serves no one for sure. I was watching the show Scandal, Cyrus had lost his husband and Mellie had lost her teenage son and was still deep in grief months later. Those around her were trying to be compassionate but she was still not dressing and refusing to leave her home months later. The two were having a conversation and Cyrus ends with, “To take a measure is cruelty.”

Mellie: It’s not the same. My child, your husband. It’s not the same.
Cyrus: I keep hearing that. The loss of a child is greater. I resent that, never having lost a child. I resent having to feel like losing the love of my life, the only someone who ever made me feel like I was truly me, is less of a loss, is smaller than your loss. I am now broken. I’m not me. I’m forever changed. I’m undone. A broken heart is a broken heart. To take a measure is cruelty.

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Loss hurts. It hurts so deeply but each person’s experience is different and we have no idea of knowing how it is for them. We do know it hurts to compare losses. A family who discovers that an organization will not help them because their loss was not deemed worthy enough, feels rejected.

I had a family in need. They were told they would receive services from a nationally known organization. People constantly refer to this organization and they are a wonderful organization but like others, they have a dark side as well. This family learned it the hard way.

Told one thing by nursing staff yet refused assistance, the family turned to Dragonflies For Ruby for assistance. I hurt for them. I had seen the added devastation to families during their darkest hours, seeking compassion and love, yet being sent away because their child didn’t make the cut. They knew this, because the nurse was tired of families being rejected and she had to share with this family they why.

Most families will never know this. Most families will not be told the reason services were not provided and while that may save them from added devastation, that doesn’t make this scenario right. And this needs to change.

We are screaming for equality in this world right now. There are hundreds, if not thousands of organizations out there trying to ensure that people are treated equally and fairly yet discrimination of our tiniest humans is still taking place. Maybe it’s the culture of death? Maybe it’s another lobby against these tiny humans? Maybe it’s a lack of understanding for the needs of bereaved parents?

I believe it’s all of that plus more but because I believe the best in most people, I will err on the side that it’s a lack of understanding for the needs of bereaved parents. Because this is something that I can wrap my head around and facilitate change. To see that it is a lobby or lumped into the culture of death makes this issue much harder to tackle in my mind.

So what can be done?

We continue to share with others the needs of bereaved parents. Sure, each family might not need or desire the same services and resources and there are certainly differences in the types of pregnancy loss but all bereaved parents need compassion, love, and support. They should not be denied services based solely on disability, appearance, or gestation.

Does this mean that organizations cannot specialize in a particular form of pregnancy loss? ABSOLUTELY NOT! What this means though, is that:

  1. An organization should not pretend to be available for all forms of pregnancy loss.
  2. An organization should provide a resource available to fill the need of the bereaved family when they do not support their form of loss.

Organizations should be transparent. My organization states that Dragonflies For Ruby is a unique service for families experiencing pregnancy loss in any gestation. This implies (in my mind) that no matter how early or how close to term a baby is, the organization will support that pregnancy loss. Could the organization be more clear? I suppose we could list the forms of loss and dig a bit deeper but we are trying to be inclusive and to list all forms of pregnancy loss may accidentally be exclusive.

Bereaved families know very little about what services and resources are available to them. It is important for them to be presented with their options so they can choose what’s best for them. Failing to provide an option based on the assumption they won’t need it or want it, is not acceptable. The option should be presented anyway and let the family choose for themselves.

depressionSo, not only do some pregnancy loss organizations assume that families would not want or “should not want” a particular service, they are actually hurting families and spreading the stigma that certain forms of pregnancy loss are not worthy of grief, that families should feel shame, and are pushing families deeper into grief and pain. This is that dark side. A side that isn’t usually seen and shouldn’t exist. We can’t let it exist. We must create change and not accept these dark sides. Those who know they exist should take action or we are a part of the problem. Yes…that includes me. Because “to take a measure…is cruelty.”