Twins are much more likely to end up in the care of the NICU than singletons, and much more likely to be extremely preterm, and as a result the phenomenon of having one of twins die, while the other remains in our care, is not rare.
When I was younger, I used to think it was kind to stop referring to the surviving twin as ‘twin B’, and to remove reference to the deceased twin from the name card of the survivor. I think now that I was wrong, that we should recognize the deceased twin, and help the parents to cherish their memory without trying to erase them from the NICU.
Although I am often somewhat dismissive of qualitative research, which frequently makes excessive extrapolations from tiny data sets, there are some questions that require a qualitative approach. For example “what is the experience of mothers who have lost one of a pair of twins?”
This article from last year is a report of a quantitative study of 14 mothers who had lost one of a pair of twins, 5 antenatally and 9 after birth, in the NICU. (Richards J, et al. Mothers’ perspectives on the perinatal loss of a co-twin: a qualitative study. BMC Pregnancy & Childbirth. 2015;15(1):1-12. Open Access)
The message of the article is that, not surprisingly, this is a major life event which shakes mothers just like the death of a singleton, but that the health care providers can make a difference, sometimes with very minor effort on our part.
A good example of what NOT to say: ‘at least you’ve still got one’. And a mother’s response:
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’.
An example of how profoundly the event can affect the family:
‘And [surviving twin’s birthday party] it’s a week after, it’s the Sunday after her birthday not at the weekend of her birthday because I couldn’t …I couldn’t em I just can’t, I just find her birthday a really difficult day’
One of the mothers reports that a nurse would often refer to the surviving twin using the wrong name, the name of the deceased baby. That is not a hard thing to avoid.
One message is that my old idea of removing the designation “twin B” from the surviving twins crib is something that we should discuss with the parents, ask them “do you want us to still keep that notation on the identification card, or not?”
There are many other good messages in the article, which as mentioned is open access. One of the less scientific parts of the manuscript, but the most helpful for clinical practice is a separate document ‘Recommendations for Best Practice’: A list of recommendations drawn from the data for health professionals, based upon the views and experiences of participants. Which you can also download freely from the BiomedCentral website, the link wasn’t immediately obvious to me, you have to scroll down to the end of the manuscript, but before the references to find the link. I copied the link and mapped it to the title above, which might work, but please go look at the article as well.
The recommendations are divided into sections, and I am not going to reproduce them all here, just a few highlights:
- It is important to mothers that health professionals fully acknowledge parental grief at the loss of a twin whilst simultaneously focussing upon the care of the survivor.
- Mothers value very highly health professionals who allow them time to talk about their loss and refer to the names of both their surviving and deceased twin.
Trauma and Grief
- Health professionals should recognise that the traumatic nature of their loss can impact upon mother’s ability to process information or make decisions in respect of the surviving baby.
- Wherever possible, continuity of the care team is important for bereaved mothers. This provides ‘familiar faces’ for mothers with whom they build up relationships of trust during their time in hospital.
Thanks for highlighting our paper. We’re busy turning our data into training packs for staff – we’re making a powerpoint slide deck, a guideline and some pamphlets and will work towards making some short video clips as well. If people are interested then email me email@example.com or visit our website http://www.neonatalresearch.net/butterfly-project-death-of-a-baby-from-a-multiple-pregnancy.html
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