October is Pregnancy and Infant Loss Remembrance Month, with a special call out on October 15th. On that day, I interviewed Now I Lay Me Down To Sleep photographer Vicki Zoller, who volunteers her time with the Seattle chapter of NILMDTS, taking pictures of families who are experiencing a loss. Read that interview here. Today on the blog, we meet Alison Mandi, the mother of Evelyn, whose brief life was recorded by Vicki through the NILMDTS program.
Sharon Muza: Who suggested that you consider using the services of NILMDTS to help you to record the life and passing of your child?
Alison Mandi: I stumbled upon Now I Lay Me Down to Sleep when I was searching online for information about chromosome conditions like the one my daughter had. I was amazed to learn that there were several photographers in the Seattle area that volunteer their services in this way. I contacted Vicki Zoller, who was compassionate toward our situation and eager to help us tell our daughter’s story with pictures. I am so glad I found Now I Lay Me Down to Sleep! The photos I have of my daughter, Evelyn, are one of my most precious possessions.
SM: What was it like to have the experience of having a very intimate time recorded? (especially by someone you didn’t know)
AM: It takes a very special person to voluntarily put themselves in the middle of such a difficult journey, generously offering their time, energy, and talent for free. NILMDTS photographer, Vicki, not only became an integral part of helping us tell Evelyn’s story but also became a dear friend.
When we learned during the pregnancy that our unborn baby had a severe and life-threatening chromosome disorder, we started a blog to share our experience with friends and family. Recording and sharing our experience really helped others know how to support and pray for us and also helped avoid uncomfortable questions and in-person encounters over and over again.
When we initially contacted Vicki, she acknowledged that even though our little girl was not yet born, she was still a very real and important part of our lives. She offered to do a maternity photo shoot in addition to coming to the hospital for her arrival. “Having those images while she is still snug and safe inside you will add to the story of her life”, wrote Vicki in her email.
At 3 AM, 36 weeks into the pregnancy, we were preparing for a cesarean section delivery. In those early morning hours, we called Vicki, who, recognizing that our time with Evelyn could be short, came as quickly as she could to the University of Washington Medical Center. By a miracle of God, our little girl was born at 4:39 AM, breathing on her own. Vicki was there to capture her very first moments in the world and the first time she was placed in my arms. But more than just take pictures, Vicki shared our tears and our smiles, joining us in our oohs and ahhs at her tiny fingers and toes, her funny facial expressions, and her sweet baby scent. Evelyn made it to the next day, but we learned that morning that she had a very rare condition called Triploidy (we did not have an amniocentesis during the pregnancy, so up until this point we had only a general sense that something was wrong based on the ultrasounds and quad screen). With the new knowledge that there was little we could do to help Evelyn survive, we agreed to pursue “comfort care,” taking Evelyn out of the NICU and bringing her into my hospital room. Vicki returned to take more photos, this time without all of the wires, tubes, and limitations of the NICU. That photo shoot is one of my favorite memories I have of her life.
SM: Were there any family members that objected or felt it was inappropriate to capture these moments and memories of your daughter on film?
AM: No, we are very grateful that our family was very supportive of our decisions throughout the process.
SM: Has having these memories and pictures helped you to deal with your grief?
AM: Absolutely. Though painful, the memories of my time with Evelyn are ones I never want to forget. In the weeks and months after her death, I spent time looking at her pictures, praying, journalling, blogging, and reading Bible passages to help me process my experience and loss. I spent time putting together an album of the photos and story of her life. Despite what some may think, the last thing I want is to forget what had happened. The photos helped me feel closer to my daughter and to grieve the way that I needed to.
SM: What would you want childbirth educators and other birth professionals (doulas, midwives, doctors, L&D nurses) to tell parents about the NILMDTS program?
AM: I would strongly recommend the services of NILMDTS to any parent going through loss. Some mothers I’ve spoken with who have experienced infant loss were in such a state of trauma that they didn’t consider taking photos, unsure if they would want to remember such a difficult time. But all of them now say that they wish they had a decent photo of their child to remember and honor them with. I am so extremely thankful to have beautiful photos to help me cherish my sweet baby Evelyn. In addition to a network of amazing, compassionate photographers, NILMDTS also has parent volunteers willing to connect with those parents who have recently experienced a similar loss. The amazing women that I met through NILMDTS were instrumental in helping me through my grief.
SM: Can you share a bit of your daughter’s story?
AM: In early 2010, I experienced a miscarriage, which was devastating. So, when my husband, Mark, and I learned we were expecting again later that year, we were nervous, but hopeful. Making it to the 12-week milestone and hearing our baby’s heartbeat brought excitement and relief. We started to plan for life as parents and shared our news with friends and family. Just a few days before we were scheduled to find out the gender of our little bundle, around 18 weeks into pregnancy, a nurse called to inform me that the quad screen came back abnormal and we would need to come in for an ultrasound right away. The ultrasound confirmed that something was not right, and doctors believed our daughter had Trisomy 18, a rare and life-threatening chromosome disorder. Our lives were completely changed from that point on. Though our baby was still alive, the joyful anticipation of bringing new life into the world was lost. Every day was a challenge filled with many fears and tears. But, by God’s grace, he gave us the strength to make the most of each day and allowed us to create memories with her even while she was still in the womb. Mark and I are Christians and our faith in Jesus Christ and eternal life through him was the one thing that gave us hope and strength to endure the hardship. Through prayer and encouragement from others, God made it clear to us that this baby was in his hands, loved and treasured, no matter what the outcome. We named our baby girl Evelyn Grace. We prayed every day for a miracle.
I had terrific care under our doctors at the University of Washington Medical Center. They were realistic about the situation, but championed Evelyn all the way and allowed us to spend extra moments in ultrasounds just to watch our little girl wiggle around. At 36 weeks, I was concerned that I hadn’t felt Evelyn move much, so Mark took me to the hospital to make sure she was still okay. After hours of monitoring, the doctors determined that a cesarean section delivery would be necessary if we hoped to meet our daughter. Evelyn Grace Mandi was born on Monday, February 28th, 2011 at 4:39am. We had 69 wonderful hours with her before she passed away peacefully in my arms on Thursday, March 3rd around 1:40am. We learned that she actually did not have Trisomy 18 (three sets of the the 18th chromosome), but Triploidy (three sets of EVERY chromosome). Triploidy is actually not uncommon, but 99% of triploidy babies don’t make it past the first term, resulting in miscarriage. We felt so blessed by the time we had with her, even though we will miss her forever. She weighed only 2.0 lbs and measured just 15 inches, but the impact she had on my life and others was enormous. Truly, my prayers for a miracle were answered.
SM: Is there anything else that you would like to share or would like Science & Sensibility readers to know?
AM: Many other mothers who have faced child loss that I’ve spoken to feel the same way as I did about wanting to remember their child – that looking at pictures and having an opportunity to share what they went through was an important part of the healing process. However, most people, not without good intention, will try to avoid bringing up the loss in an effort to protect the grieving person from having to recall painful memories. I actually believe this was one of the hardest things to deal with – the silence of loved ones, coworkers, and even doctors in the aftermath of my loss. It felt like someone so precious to me had been completely forgotten, or worse, that she never existed. If you know someone who is experiencing a difficult pregnancy and/or child loss, I would encourage you not to be afraid to talk about it with that person. Ask if they’d like to share photos or stories about their child. You may not know exactly what they are going through or what to say, but a listening ear and compassionate heart can go a really long way.
SM: Thank you, Alison and Mark for being willing to share the story of your beautiful baby girl, Evelyn and for helping us all to recognize the importance of the memories provided by Now I Lay Down To Sleep.
Resources for families who have suffered a loss during pregnancy, or experienced the death of their infant may find help and information from the following organizations:
Don’t forget local resources that your families can connect with for face to face support. What are the resources that you share with families who have or are experiencing a pregnancy or infant loss?