Many readers of this blog will recognize the name of Nick Embleton as someone who has done a great deal of nutrition research, and research into the intestinal microbiome of very preterm infants.
He also has a major interest in parents’ experiences of perinatal loss; his group has studied parents who suffered the loss of a twin. This is an unfortunately common experience in the NICU, twins and higher order multiples are much more likely to be born prematurely (for triplets it is actually quite rare to be born at full term), and for one twin to die, while the other is still being cared for in the NICU, happens frequently.
Richards J, et al. Mothers’ perspectives on the perinatal loss of a co-twin: a qualitative study. BMC Pregnancy Childbirth. 2015;15:143.
Richards J, et al. Health professionals’ perspectives on bereavement following loss from a twin pregnancy: a qualitative study. J Perinatol. 2016;36(7):529-32.
I remember as a young neonatologist (and yes, I can remember that far back) when this happened, we thought it was kind, when baby “Smith 1” died, that baby “Smith 2” should just become baby “Smith”. Motivated by concern for the parents, and not wanting to emphasize the loss of the other twin each time we talked about the surviving twin, we basically effaced the memory of the dead twin from our conversation.
I now think that was a major error, and this research confirms that thought.
Although we were trying to decrease the pain of parents who were going through the loss of one twin, while still trying to care for the surviving twin (or triplet(s)); I think it was likely often experienced as trying to erase the memory of one of their babies. In my NICU we now make great efforts to use the first, given, name of each baby (unless the parents haven’t yet decided), and talk about the babies among ourselves using both given and family names. I think that is a better way to refer to our patients, and stops the avoidance, we don’t call the surviving baby “Smith twin 2”, but “John Smith”, and acknowledge the death of baby “Jane Smith”. I think over the years we have come to understand many things which mark the experience of parents who have lost one of twins.
But what really makes a difference to parents going through this cruelly painful experience; to have to remain in the NICU where one baby has died, while caring for another who might still be very sick?
The studies from Newcastle shed some light on that experience.
Here is one quote from the mothers’ paper :
What I got a lot of … the doctor at the time really quite upset me… she often said to me, ‘At least you’ve still got one’, and that was one of the worst things that anyone could possibly say. ‘You’ve still got [surviving twin] though’ and I know I’m really grateful I still have[surviving twin] but that’s like saying to someone that has a child of four and six and the six year old one dies, ‘well you’ve still got the other one, so that’s ok’. And it was really quite upsetting. I knew that she didn’t mean it in any nasty way’.
From comments like that, and a thematic, qualitative, analysis of interviews with 14 mothers who had lost one of twins (some before birth, others after) the team have developed guidelines for helping mothers in such a situation. The concept of “grief on hold’ is, I think, really important. These mothers don’t feel like they can really grieve the dead baby, as they are trying to hold it together for the emotional needs of the surviving infant.
The guidelines they have developed are available on their website, together with films made with parents speaking about their loss, and downloadable resources, available in several languages, including the pdf of a slide presentation, and a 2 page leaflet for parents. http://www.neonatalbutterflyproject.org