When I settle in to write about my story I see the color of the blue sky on a warm March day. The day our life changed forever. The day we received the heartbreaking news at our 20-week ultrasound that our baby girl, Pearl, had a fatal condition and would not survive after her birth.
As we walked out of the doctor’s office, I knew the sky would never be the same color of blue. My husband and I drove home and began to make muffled plans to honor and celebrate the life of our Pearl. We had very little guidance as we started the process, but gathered a team of people around us to bring support and hold up our arms when we were too weary to walk.
We wanted to celebrate her life each day and make memories to last a lifetime. Each day was a gift and even as it hurt, we smiled through the tears and loved our baby well. We treasured ice cream at our favorite ice cream store, dancing to our song, a trip to Ireland and swinging at the park with her brothers and sister. Pearl danced gently in my belly and we fell more in love with her each day.
Twelve weeks after the diagnosis, it was time to meet Pearl. On a warm summer day in June, as we watched the sun rise and shower us with pink rays, Pearl was placed in our waiting arms. We kissed her goodbye, whispered secrets in her ears and bathed her with our tears. We will never forget the moments we had with Pearl and will treasure each memory and photograph lovingly snapped by our NILMDTS volunteer.
My experience as a Labor and Delivery nurse helped to shape our journey with Pearl. I was able to create a detailed Birth Plan, meet with other health care professionals, and craft a picture of what our delivery would be like. I also knew that many other families who were facing a fatal prenatal diagnosis did not have the same insight or resources available to them.
As the months proceeded forward after Pearl was born, I continued to sense that there was something I could do to help other families who receive the devastating news of a fatal diagnosis for their unborn baby. My experience as a Labor and Delivery nurse and our journey celebrating the life of baby Pearl motivated me to be willing to come alongside and help others in the same circumstances.
I began to do some research and learned more about the concept of Perinatal Hospice. I knew this was the work I wanted to do. I began to create a space for families facing this journey of a lifetime…a perinatal hospice, String of Pearls.
String of Pearls offers tangible support to families facing a fatal prenatal diagnosis. We are able to coordinate care and function as a liaison between the family and the health care professionals. A Birth Plan is created, keepsakes provided, photos with a NILMDTS volunteer arranged and funeral planning completed. Emotional support is gently and compassionately given to families as they create ways to embrace and love their sweet baby. The process of finding hope in the midst of the heartache begins the moment the diagnosis is given.
String of Pearls gently encourages their families to embrace the moments they have with their unborn baby in the womb. There is so much that can be done in the short time the baby is still here. We help the family to make memories that last a lifetime. And, after the baby is born it is a beautiful and painful process to help families parent the lasting memory of their precious baby.
This is a journey that changes the family’s life and the lives of the people around them. When space is created to celebrate the life of each sweet baby, even in the grieving process, hope and joy emerge through the tears.
Laura Huene is the Director of String of Pearls, a nonprofit organization specializing in Perinatal Hospice. Laura is married to Joshua Huene and they live with four of their children in Denver, CO. Their newborn daughter, Pearl, was carried to term in 2006 with the love of her family and is now in heaven. Pearl’s legacy is now Laura is reaching out to help other parents who are walking the same journey that she and her family have walked. Laura uses her previous labor and delivery nursing experience to serve about 200 families locally and nationally every year.