Meet Emily Long from Helen James Foundation
At 38 weeks pregnant, my husband, Joel and I heard the words every expecting parent fears, there is no heartbeat. The shock and terror of that moment is truly indescribable. I have never felt so scared in my life. There we were looking at our baby girl, Helen James , on an ultrasound machine. We could see her, but the heartbeat and life that had been so vivid for 38 weeks was gone. In the blink of an eye, Joel and I had lost our daughter.
Helen was a very active baby and moved constantly. On June 4 when she didn’t move after dinner, I knew something was seriously wrong.. We called my OB group who advised us to come to the hospital. I delivered Helen via C-section during the early morning hours on June 5 at Saint Thomas Midtown Hospital in Nashville. From the surgery to the aftermath, the nurses and doctors were simply amazing. I will never forget them telling us that we had a beautiful baby girl. The cause of Helen’s death was never determined. There were no visible signs of issues with the umbilical cord or placenta during the C-section. We chose to have an autopsy, but that also did not provide any answers. I’m not sure that a concrete cause would have provided us the closure we needed, but we knew we had to try to find out what happened.
Following the C-section, there was mention that Helen could be in our hospital room with us. Joel and I could not comprehend what the nurses were saying. The shock, lack of sleep and pain medication numbed my senses to the full magnitude of what was happening around us. But then a nurse brought Helen to our room around 6 a.m. and said that she could stay with us as long as we wanted her there.
The hours went by, and we did not want to let her go, so the staff set up something they referred to as a cooling blanket, which was set up in a crib and was so discreet you would never have never known it was there. This Cuddle Cot became a lifeline to our daughter. Over the course of three days, our family and friends traveled from all over the country and as far as Panama where my sister lives to come and meet Helen James. Our hospital room was filled with emotions – tears and sadness and heartbreak, but there were also moments of laughter and love. While the experience was beyond painful, it was also one filled with hope.
The Cuddle Cot gave our family and friends a way to both rejoice and mourn over our daughter in the same moment, to hold and kiss her and to love her. We are so thankful that Saint Thomas Hospital had a Cuddle Cot, and that we were given this additional time with Helen James. We believe it was a crucial part of our acceptance, grieving and healing, and we cannot imagine our situation without it.
We were sad to find out that very few grieving parents will have access to Cuddle Cots. The device is practically unavailable in most hospitals, despite 24,000 babies being stillborn in the U.S. every year, which is 10 times as many deaths as those that result from SIDS. In our case, the Cuddle Cot was donated by a family who had been in a similar situation in the past. A huge part of our healing process has been having a mission — somewhere to funnel our grief and confusion and love and energy. Joel and I decided to honor our daughter by creating the Helen James Foundation. Its mission is simple: To support grieving families who are experiencing a pregnancy or infant loss. We have focused on Cuddle Cot donations across the state of Tennessee and in Chicago. Additionally, we donated funds to the Saint Thomas Midtown Hospital to help with the construction of a new Family Bereavement Room. This room provides families who have lost a child a place inside the labor and delivery unit to spend time with their baby. They will be able to give their child a bath, dress them and create hand and foot imprints keepsakes in a private space. We plan to continue raising funds for Cuddle Cots and also to support families through donations for grief counseling and support groups.
We recently added infertility to the foundation’s mission in January of 2021. Our hearts have been heavy as we have walked beside our friends who have experienced this. Our hope is that we can help raise awareness and support and be advocates for those experiencing the difficult journey of infertility.
Joel and I will always cherish our first-born child and forever remember the ways that Helen has taught us to love and hold tightly to one another. We hope our story brings much needed attention to this rare, but life-changing Cuddle Cot device that gives grieving parents like us the gift of time. We also hope that we can be a source of support for parents experiencing pregnancy and infant loss or for those who are hoping to become parents.
We love you always and forever, Helen James, and we are so thankful to be your parents.