There was a time when parents whose babies were stillborn (defined in Canada as a fetus at ≥20 weeks’ gestation or ≥500 g birth weight, perinatal death) or who died shortly after birth, were not encouraged to see their babies or memorialize them in any way, in the belief that this would spare families further pain.
Recent research supports a completely different approach, as exemplified by the charitable organization, Now I Lay Me Down to Sleep, NILMDTS provides free-of-charge professionally taken photographs of stillborn babies and babies who have died early in life.
“The whole way we deal with infant death in society has changed for the better in the last few decades. Up until even the 70s and 80s if you had a still birth, doctors and nurses meant well but they thought that the best thing for mom was to take the baby away, don’t let her look at the baby, and we’ll pretend it never happened and that’s how the mom will heal. But that is obviously not how people heal. Now it’s a totally different approach.” (Missy Thomas, Director of Programs, NILMDTS)
In Canada in 2019 between 15-25% of pregnancies end in miscarriage or still birth. That means that every year, over 3,000 families in Canada lose a baby. For people who choose to memorialize their baby, a photograph can anchor the memory and help unite a family despite the loss.
Missy Thomas, Director of Programs for NILMDTS has also served as one of the organization’s specially-trained remembrance photographers since 2015. According to Ms Thomas, photographs are an important way to honour babies who have died, to help family members form a stronger identity, both as individuals (parents, grandparents, siblings and others) and as a family unit, to serve as concrete evidence of their baby’s existence, and to help ensure that their baby is always remembered.
“I think the photos bring honour to that baby’s life. A lot of parents feel like their baby wasn’t real if the baby is not still here so the photo gives tangible evidence of their baby, and they can say, 'I am super proud of all of my kids, including the one that’s not with us anymore' They can show that baby off along with their other children, if they have them, and say, 'I am a mom, because here is my baby.' I have talked to parents who say, 'I thought I would never forget his face and then I woke up in a cold sweat because I could not remember what his ears looked like'. We pay attention to the little details when we take photos, to get the ears, the toes, the cute little baby parts. It seals those memories for the families.”
NILMDTS, based in the U.S., is currently or has been operating in 40+ countries worldwide, including Canada, and has 2,200 active volunteers. It was founded in 2005 by photographer Sandy Puc and parents Cheryl and Mike Haggard whose baby died as an infant. To date, NILMDTS has photographed more than 50,000 babies. Their mission is to give parents the gift of professional portraiture that they would not be otherwise able to have due to the fact that these babies do not leave the hospital- they are either stillborn or in NICU on life support for a short time.
“We started in 2005 when our founder gave birth to her son Maddux. He had a rare condition with no treatment, so after 6 days, they made the decision to take him off life support. They saw photos on the hospital walls of mothers with babies and they thought, 'we want photos of Maddux'. They called the photographer whose name was on the pictures in the hallway. The assistant said, 'she doesn’t have any availability for a few days' and they said, 'oh it will be too late then.' And the assistant said, 'what do you mean?' and so they explained and the photographer dropped everything and went that night and took photos. So she was able to get those professional photos and show off her son to the world.”
Feedback from parents has been overwhelmingly positive. Parents are encouraged to include extended family members in the photos if they wish, all with the goal of acknowledging, honoring and remembering their unique baby and normalizing the family’s lived experience.
“The feedback from families has been really incredible, really positive. We have never had a family regret getting photos. We hear from families all the time that say, “I wish you were around in 1984 when I had my stillborn baby because I don’t have anything of his, or I just have a hat or an old polaroid.” Parents say, “when I saw your photos, that’s what she looked like, that’s my memory of her.” Parents love to pull those photos out in their grief support meetings and show their baby to the group.”
For volunteer photographers like Ms. Thomas, this work is a privilege.
“Probably every volunteer feels the same as I do. As difficult as this is, it gives me back more than I give it. We always say that it is an honour to meet each and every one of those babies.”
For more information, and to find a photographer in your region, go to Now I Lay Me Down to Sleep.
Additional Reading
Bloomer, M.J., O’Connor, M., Copnell, B., & Endacott, R. Nursing care for the families of the dying child/infant in a paediatric and neonatal ICU: Nurses’ emotional talk and sources of discomfort: A mixed method study. Australian Critical Care. 2015; 28(2):87-92
Heazell AE, Siassakos D, Blencowe H, et al. Stillbirths: economic and psychosocial consequences. Lancet. 2016;387:604-616.
Kenner, C., Press, J., & Ryan, D. Recommendations for palliative and bereavement care in the NICU: A family-centered integrative approach. Journal of Perinatology. 2015; 35:S19-S23.
LeDuff LD 3rd, Bradshaw WT, Blake SM. Transitional objects to facilitate grieving following perinatal loss. Adv Neonatal Care. 2017;1:347-353.
Martel & Ives-Baine. Nurses’ Experiences of End-of-life Photography in NICU Bereavement Support. Journal of Pediatric Nursing. 2018; 42:e38-e44.
Pregnancy Loss and Infant Death Alliance. (2008). Practice Guidelines: Offering the Baby to Bereaved Parents. Retrieved from: plida.memberclicks.net/assets/docs/PLIDA-Practice-Guidelines-When-Bereaved-Parents-want-to-hold-their-baby.
Ramirez et al. Professional Bereavement Photography in the Setting of Perinatal Loss: A Qualitative Analysis. Global Pediatric Health. 2019; 6:1-12.