What I Wish People Understood About Perinatal Hospice

We hear the words hospice, and often think, “the end” or “giving up”. The opposite is actually true. Hospice can be empowering and freeing, bringing comfort and even hope. It isn’t just about the end of life on this earth. It is about living every last moment, the way you choose.

In the case of perinatal hospice, it is even harder to convey a message of hope. Families facing a life-limiting diagnosis for their sweet baby, a baby who has not yet even taken his first breath on planet earth, can spark a parent to feel fiercely protective. Protective of the right to hope. To believe in miracles and the preciousness of human life. Everyone around the parent may feel the same protective instinct. How…how, when that sweet baby is still kicking happily in her mother’s womb, can I speak to her about finding support from those who walk with families through loss?

“I will tell her later…when she’s ready to hear it.”

It is so hard for a parent to know they would want this type of support, and even harder to understand, as a friend, that it would be essential to be aware of resources before the time of the baby’s birth. A parent is not prepared for the words “incompatible with life”. Most people do not know what they would do if they heard those words about their baby, and few would ever spend time thinking about or researching such a painful topic. So, little is known about resources to help in these circumstances, until after a loss occurs. I cannot count the number of families who have conveyed to us, after losing their baby…

“I didn’t know you were here. I so wish I knew that I could’ve had support, or beautiful photography, or an outfit for my baby.”

Another parent: “We needed to know the resources and birth plan information 3 months ago…not handed to us in a folder with some pamphlets, and little to no explanation at the time of our baby’s death.”

“I called the hospital perinatal hospice program and they never returned my call.”

“At first I thought…no way…I don’t want some stranger coming in here. Then you walked in, and you were gentle and understood. Now I want every parent to know, they want this. They may not know it, but they want this support. People need to know.”

“I didn’t know I could…”

“If only…”

Those are the stories that tear our hearts out. We can’t bring someone’s baby back. We can’t make this canyon of grief and sorrow better. We can’t fix this kind of pain, and we would never try. But, we can alleviate many regrets. We can do something about “if only”.

Perinatal hospice is not meant to take away hope. We will hope with you, pray with you as you wait to meet your sweet baby. We will enter in and walk with you, helping you to embrace the gift of time you’re being given with this precious life. We will help you plan for your time with your baby. Your story. Your way. If your baby defies the odds and the life limiting diagnosis, we will rejoice with you, and continue to help capture precious moments of the miracle of your sweet child’s life. And, if you have to say goodbye to your child, we will be there too. In the moments, making sure you have what you need, and the time is spent the way you want to spend it. Honoring this tiny life. Filling every sweet moment with love.

And, the support doesn’t end there. We can walk with you to plan a remembrance ceremony, funeral, or other end of life celebrations, help capture that time, and provide support in the coming days, weeks, months, and years.

Together, we at Sufficient Grace Ministries are working to change the way hospitals and caregivers deliver this difficult news to parents, and the kinds of support offered to those walking through the wilderness of a life limiting diagnosis, and later through grief. No parent should have to walk here alone. We are here to walk with you.

Through…

Hospital education to train on the benefits of perinatal hospice birth and bereavement services, compassionate care for bereaved parents, and understanding the grieving parent’s perspective. We are also equipping many hospitals with SGM Perinatal Hospice Birth and Bereavement Services and Dreams of You support/memory-making items. Many hospital training programs offer a “checklist” of things to do. Give family mementos…check. Get baby’s footprints…check. Hand them a folder with some support group information…check. Our program is not a checklist. We are here to enter in and walk alongside you awhile, offering a listening ear from someone who understands, and resources that may be difficult to find on your own when you’re overwhelmed and don’t know where to look.

Dreams of You Memory Books, Comfort Bears, clothing, mementos, and Walking With You support resources sent to parents worldwide.

Online, telephone, and in a growing number of locations, in person support from Stillbirthday certified birth and bereavement doulas.

Remembrance photography in a growing number of locations.

This video shares just some of the services provided through Sufficient Grace Ministries:
Dreams of You Song by Tim Gerken III (Kelly’s son) and Lyrics by Kelly Gerken

Comments

  1. Amber Young says:

    I would love to get this started in my area. I dont really know where to start, but I want to offer it to parents, like myself, who would benefit from this information.

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