A Family’s Journey

It was early one morning, mid-March in 2018 that I received an email from Benecia and Ernest asking if I was open to documenting their baby’s journey through photography. At 13 weeks in utero then, the foetus was diagnosed as having acrania, a fatal foetal abnormality. In simple terms, the baby had partial absence of the skull and scalp and had almost 0% chance of survival. 

We met up on a breezy Saturday morning at McDonald’s, East Coast Parkway, a few months later – we were to lock down the details of the upcoming photoshoots. Benecia wanted a maternity shoot before the arrival of the baby. 

She shared that while she and her husband knew that the odds of the baby’s survival were very much stacked against them, they decided to journey with him for as far as he can go. Together with their elder daughter, they did many activities together, took plenty of photos, and created as many memories as they possibly could. 

She also shared that in their research, that they came across a doctor from the United States who has worked with babies with this condition, and if the stars were aligned, there would be a very slim possibility of the baby having a fighting chance. 

Hope. Faith. Trust. Those were key values that I witnessed that day. 

As a photographer for Now I Lay Me Down To Sleep (NILMDTS) for a decade, I’ve always refrained from prescribing advice of any kind as I am not a grief expert, nor have qualifications in counselling. 

With Benecia, I could not help but offer a parting thought while trying desperately to hold back the tears in my eyes: I told her that while it feels like she is going through one of the worst moments in her life at the moment, she has the strength to get through this and one day will look back and realise the wonders of the human spirit. 

I knew so because I have witnessed so. Baby Elkan became baby number 9 that I’ve photographed. 

He arrived in September and was born alive. It is not often that I have the luxury of time to prepare for the arrival of a NILMDTS baby, but the end result is similar as with after every such photoshoot; I would need at least a day to digest the reality of the situation — that I had just witnessed the death of a baby or the inevitable fate of it. 

In contrast to the lovely morning I had photographing the family a month before, (where there were squeals of laughter from them and their daughter, coupled with pensive moments where I am sure all of us in the room were wishing for a miracle), the hospital room was filled with a certain sense of peace, insurmountable grief, but a resolute acceptance that they had less than a day with Baby Elkan before saying their final goodbyes. 

I watched them from a distance as they picked up the pieces and moved on, thanks to social media. Life took over for all of us, until they shared in May 2020 that Baby Raphael was born – in the midst of the Covid-19 pandemic no less! – healthy and chubby. What a champ! 

When it was socially safe to do so, I was invited again to photograph the family. Spending some time with them that Saturday morning was such a salve for the soul and a song to the heart. 

Their daughter, older but still as cute and amiable, showed me the photo books her mum had made, comprising photos from the past few photoshoots. The books were well thumbed, as the little girl walked me through the various scenes, sharing about her other baby brother Elkan. 

One of the greatest gifts for me, is to see the end result of the rememberance photography work I do, how it has helped their families through their rough times, how it brings them peace, how it helps them preserve the memory of the fleeting existence of their loved one. 

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