How many children do you have?
Our first child, a boy named Lucien, passed away on 28 May 2014 when he was just under 5 months old.
Our second child is a girl named Elke. She will be one on 21 October 2016.
Could you tell me the details around the loss of your baby? Was there anything that could’ve been done to prevent it?
Lucien was just under 5 months old when he passed away.
At the end of a very normal day when Lucien was his usual chilled out, happy self – laughing and playing and feeding as usual, I put Lucien in his cot for his afternoon nap. We thought Lucien had been having a nice long sleep, but after about two hours we went in to his room to check on him we found him unconscious and without a pulse. Even though we commenced CPR immediately, Lucien’s brain had already been deprived of oxygen for too long and he suffered catastrophic brain damage.
A pathology investigation which took many months determined that Lucien had died as the result of a lung infection. We were completely shocked by this finding because Lucien had seemed to us to be in perfect health. He didn’t seem to be even slightly unwell – we’d spent the day with my father who is a doctor and he also found it hard to accept this finding because of how healthy and happy Lucien had been that day.
We don’t think there was anything that could have been done to prevent Lucien’s death because there were no outward signs of this lung infection. That is why we are so happy that Red Nose is expanding its remit to include research into sudden and unexpected deaths of seemingly healthy babies, from causes other that Sudden Infant Death Syndrome (SIDS). If this expanded research can lead to knowledge of perhaps very subtle symptoms for parents to be aware of, that will be a wonderful thing – we hope no other family has to go through what we went through.
How does it make you feel when people ask about your children, and you having to explain the loss of a child?
This isn’t a straightforward question to answer. Because my response can change depending on the circumstances surrounding the question.
Sometimes if I’m asked by someone I’m never going to see again if my daughter, Elke, is my only child, I might say “yes” to avoid being asked the next inevitable questions of “how old is your other child” or “where is your other child”. Sometimes it doesn’t seem worth the emotional energy to go into our story. And sometimes I say that I have two children but my son is at home (which is true in the sense that his ashes are at our house). But mostly I answer honestly that I have two children and if more questions are asked, I answer these honestly as well. It really depends on how emotionally resilient I’m feeling at the time.
I find it hard to go into the details of Lucien’s death because I feel that people would find it hard to believe that a child could show zero signs of illness when in fact they had a lung infection that resulted in their death. I know that I would have found it hard to believe – until it happened to me.
Has it helped you grieve to talk about it openly, or is it still as difficult?
Absolutely, talking about Lucien – his life and his death – has helped with grieving. In the early months after Lucien passed away I must have recounted the story of the event of his death a hundred times or more, and I believe that through the recounting of the incident, my brain was able to process the reality of having lost my child.
My husband and I had regular counselling sessions at Red Nose where we talked through Lucien’s death and what it meant, and these sessions were invaluable in helping us move through our grief. Red Nose also facilitates separate support groups for bereaved mums and dads which my husband and I attended. Having the dedicated time and space to share stories with parents who could truly understand what we were going through was so helpful for healing our wounded hearts.
I no longer find it painful to talk or think about Lucien. Before if I spoke about Lucien I would feel sadness and devastation, but now after all the bereavement support from Red Nose, when I talk about Lucien, more often than not I am filled with feelings of happiness – joyous memories of our time with Lucien in life. For me talking about what happened was absolutely crucial to healing.
How do you think you’ll go about explaining the loss of your son to Elke?
My husband and I will always be open and honest with Elke about Lucien’s death – we don’t want his death to be a taboo subject. We’ve talked to Elke about Lucien since the day she was born, we have photos of Lucien up around the house. Our family and friends tell Elke stories about Lucien. Lucien is very much a part of our family even though he’s not physically present. We want Elke to know her brother.
How and what in particular do you hope to raise awareness about – especially in light of International Baby Loss week?
I would like at the very least for people to be made aware of the new name for SIDS and Kids – Red Nose – so that people know who to get in contact with for safe sleeping advice and bereavement support.
I would especially like to raise awareness of Red Nose’s Grief and Loss website which can provide bereavement support 24/7 to people anywhere. I’m lucky enough to live in a capital city in close proximity to a Red Nose office, but people in remote areas or those who might find it difficult to get to a Red Nose office, for whatever reason, can now access bereavement support much more easily.
I would very much like to raise awareness of the fact that Red Nose relies on donations and sponsorship to conduct critical research, provide its absolutely invaluable bereavement support, and distribute educational material to expectant mothers and caregivers on ways to reduce the incidence of sudden and unexpected death of babies and infants.
If you or anyone you know is looking for support visit the Red Nose Grief and Loss website here.