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Challenge: Pregnancy and Infant Loss

This special cot was a lifeline to our stillborn daughter, now we want other parents to have them, too

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The idea that our daughter would never take a breath or live to see one moment on this earth never crossed my mind. I was 38 weeks pregnant when Helen James Long was born sleeping on June 5, 2018.

My husband, Joel, and I debated having children for quite some time and were unsure if it was what we wanted for our future. We made the decision during the summer of 2017 to let nature take its course, and the next thing we knew, I was pregnant. Just like that. We could not believe it, but we took it as a sign that we were destined to be parents.

I had an uneventful pregnancy. Outside of the standard nausea during the first trimester, it was smooth sailing. I had never felt better. Taking long walks every day, eating healthy and not drinking alcohol, pregnancy seemed completely manageable. I enjoyed the idea of our baby being with me everywhere I went. I traveled often during my first and second trimesters and loved the feeling that Helen was with me, already traveling the world, just as we planned to do once she was born.

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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. I tried eating chocolate, drinking juice and laying on my side. We called my OB group who advised us to come to the hospital. The on-call nurse and doctor confirmed our worst fears: Helen was no longer with us. The shock and terror of that moment is truly indescribable. I have never felt so scared in my life. We sat there looking at Helen on the 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.

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.

Following the surgery, there was mention that Helen could be in our room with us. Joel and I could not comprehend what they 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.

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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 had a Cuddle Cot, and that we were given this additional time with our precious angel, 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.

Inspired by that, Joel and I, along with our friends, started a fundraiser to donate an additional Cuddle Cot for our hospital in honor of our daughter. At $3,400 a piece, we would have been thrilled to raise enough money for one or two. To date, we have raised over $22,000 and have donated six new devices along with replacement kits to hospitals in Memphis, Nashville and surrounding areas. To say that we are overwhelmed is an understatement.

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We are now in the process of donating a seventh Cuddle Cot, and we continue to raise money to help place them in more hospitals, most of which we were surprised to learn have not heard of these devices. We hope our story leads these hospitals to accept our donation. Our hearts break to think that a family would have to endure the loss of a child and not have a Cuddle Cot as an option.

Joel and I will always cherish our first-born child and forever remember the ways that she 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 device that gives grieving parents like us the gift of time. Please help us spread the word and continue to raise funds for this much-needed device.

We love you always and forever, Helen James, and we are so thankful to be your parents.

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