Perinatal Hospice and Palliative Care
A Gift of Time

Parent voices


Parents who have traveled this path are the best experts of all. Here are some of their thoughts.



Parent quotes from A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief (Johns Hopkins University Press, © 2011). Used with permission.



I really have peace that we carried her to term. I know in my heart that I have given my daughter all that I could and loved her every day of her life.Annette


For me it felt more manageable to know that I had let nature take its course. And I gained a lot of strength and joy from the days I had with Alaina. Having it end sooner would not have decreased my suffering. And having it end later did not increase my suffering. It was maybe just a different kind of suffering. ... If I could go back and tell myself one thing, it would be: “You will be OK.”—Jill


A perinatologist said things to us like “the outcome will be the same” even if we didn’t induce prematurely. Now that I’m stronger emotionally, I know that the outcome would not be the same. We would not have had all of the special time to share with Gianna during her life in my womb. We would not have been able to share some amazing, precious moments with our baby and our sons.—Jennifer

 

This journey was beautiful because we were able to celebrate her life and not look at it as a tragedy. All our baby daughter will ever know is love.—John


As a mother, I have always felt that it was my job to identify what my children need and give it to them. Sometimes those needs are simple and straightforward—clean laundry, a healthy meal, a hand to cross the street safely. Maggie’s needs were not like those of my sons. She needed us to give her a safe and peaceful transition from one world to the next. Carrying Maggie to term did that for me—it gave me the opportunity to “mother” her until she didn’t need me anymore. That knowledge made it infinitely easier to make peace with her death.—Alessandra

 
She didn’t bring sadness. She brought joy, utter joy.—James

Parents often say they’d do anything to keep their kids safe. For us, we feel like we were powerless in keeping Jonah alive, but to our best ability and our best understanding of the situation, we kept him as safe and as comfortable as we could. We were the best parents we could be for him.—Heidi

 

I have had an experience that I would not ask to repeat. One that is common, in that nearly all of us have experienced loss. But one that is unusual in that a lifetime’s worth of pain, loss, love, and joy were compressed into a few brief moments. In the short time that has passed since Lily’s death, the experience has come to feel like a great gift, one that has given me a profound sense of one aspect of our being. Thank you, Lily, for giving me such a clear and deep awareness of our innate fitness for loving.—Mark

 

My entire family wanted me to terminate (I still can’t bring myself to write “abort”). They thought it would be easier on me. In the end everyone was so glad that I decided to continue. We all fell in love with her.—Jamie

 

I am so, so relieved that I had that ultrasound done that revealed what was to come. Having known his fate actually makes me feel like I had extra time, even though I would have had three remaining months whether I knew or didn’t know that he would die. Since it wasn’t the quantity of time that had changed, I guess it must have been the quality of time that had changed: I was able to really be present with him and more aware of him during those last months.—Susan

 

By giving my son the protection of my body to face the announced death, I was giving him life, all of his life, so that it would be recorded in our family, in all of our history, and in the hearts of each of us. It wasn’t a morbid walk but a formidable surge of love.—Isabelle


I didn’t voluntarily return her to God; I had no choice. I did have a choice in how I could love her, honor her, share our journey and her life with those people that we loved and knew us. We are all better for having followed our daughter’s lead in this story. She was a gift and I am grateful, every day, that we allowed ourselves to receive it.—Alessandra





Parent quotes from A Gift of Time: Continuing Your Pregnancy
When Your Baby's Life Is Expected to Be Brief

by Amy Kuebelbeck and Deborah L. Davis
(Johns Hopkins University Press, © 2011). Used with permission.