By Gwen Rahardja
Gwen is a SLT whose first child was admitted to NICU for prematurity. We at paediatricFOAM are very grateful for her being so open about her family’s experiences on NICU and how they now help Aatya understand the narrative of her early days.
My preparation for having my first baby was pretty woeful. My reading consisted almost entirely of an e-book called “Epic Sh*t with Baby”, a how-to manual for backpacking with a baby – I had big plans for my maternity leave – and an article by Jean Liedloff, author of the Continuum Concept. Both simplified early parenthood by centering it on baby-wearing. I wasn’t conscious at the time, and in fact, it wasn’t until I was writing this that I realised that the groundwork for this had been laid in my mind many years before, when in a chance conversation with a colleague who worked in NICU, she mentioned kangaroo care.
Kangaroo care is the practice of holding a baby close to the chest, skin to skin, usually by wrapping both the baby and the kangaroo care ‘giver’ together. Kangaroo care in healthcare first started in the 70s, in countries where incubators were in short supply, with Colombia being the most well known. Many studies since then have shown that it provides benefits to the baby in terms of thermoregulation, cardiorespiratory stability, and reduced risk of illness and death. A journal article published in May of this year (2) (yes, some 40-50 years later), of a “world first” study done in Australia, yet again confirmed the benefits, and concluded with the hope that this new evidence would encourage kangaroo care to be more widely adopted.
How it was for us
I was 33 weeks pregnant when my waters broke, while at work in a busy London hospital. Twelve hours later my first was born and taken to NICU. The reality on the unit couldn’t be further than the NICU I had half-imagined from that conversation years earlier. I found myself hanging around, waiting to be given a chance to hold my baby. When I did hold her, her breathing settled (the reason she was admitted to NICU in the first place), but of course no staff were ever able to stay to observe this, and so these opportunities continued to be offered sparingly. I remember one early morning going up to the still-dark unit to see her, and she was screaming, face strained red in distress. I remember the desperate desire to pick her up and comfort her, and glancing at the young, stressed out nurse, running around mid-emergency, and knowing that I couldn’t ask. Not right then – not if I wanted to be allowed to stay.
After ten days, that felt like three weeks, of mostly waiting – waiting for the ward round each morning, waiting for opportunities to do some of her care for her, but especially chances to try to breastfeed her, and waiting to use the cramped pumping area on the ward to express milk for her – my husband and I were finally told we could take her home. We left the ward post-discharge feeling like we were absconding with her. In the hospital café we took her out of the car seat required for discharge, and tucked her into my chest in a baby wrap, and walked out of hospital to go get the bus home. She is now a healthy, strong, imaginative four-year old who loves to sing, climb, scoot, and make up all sorts of stories and games to play with her little brother.
Why does Kangaroo care matter?
Separation of a newborn from its mother – as occurs when admitted to NICU – is inherently traumatic (6). We know trauma affects us intrinsically to the point that it’s hard to know where the trauma ends, and the person’s personality begins (3). Adverse Childhood events have been shown to come with a higher risk of developing diseases like cancer, cardio-vascular disease, and respiratory disease later on in life (5).
So I will never know if as a baby she didn’t cry much because she was a naturally ‘calm’ baby, or because she learnt it was futile in those 10 days in NICU. Her stubborn, independent streak – is this genuine independence? Or a reflexive, trained trauma response? That her love languages (4) are acts of service and quality time, rather than her brother’s, of physical touch. Could this be because I spent hours at her cot-side, looking at her but unable to hold her? Or that the care she received mainly comprised of nappy changes, being cleaned, being turned, and having her various probes moved, adjusted, and her feeds administered?
Implementing kangaroo care could allow an infant to thrive, not just survive, both physically, and mentally. I have heard different figures cited, about how long it takes in medicine, for a research finding to become the norm in practice – from 17 years to 50 years. We are close to 50 years now, from first observing the positive effects of kangaroo care, and it is still something we ‘hope’ units will adopt, despite research confirming over and over again, its benefits.
So this is a call to action – it is time that we embrace kangaroo care, and place it as a priority in the interventions we deliver in NICU. Units should have adequate staffing and training for the staff to facilitate parents in implementing kangaroo care, and equipment – that often costs very little – like kangaroo care wraps, and, when an infant for example requires treatment for jaundice, light therapy blankets, to enable kangaroo care, or as near an approximation as is possible, to be carried out.
If our story has spoken to you, here are some possible actions you can take – my request if to consider that you take just one that you feel you are able to do.
- Implement kangaroo care in your unit, or raise this with those who can.
- Sign up as a unit to the Bliss Baby Charter, which helps units self appraise how they are doing meeting national standards, including implementing kangaroo care, and work to meet them.
- Get to know who manages the commissioning for the unit where you work (or the one local to where you live), and see if you can influence commissioning. Bliss identified the problem with funding being at the level of commissioning, where decisions are often made by people with no clinical experience, and without an idea of what happens on the ground.
- Support the campaign for extended parental leave for parents with babies in NICU, so that parents are able to be in NICU each day with their baby – it would add weight to have doctors and other health professionals make the case for this to those in government.
- And finally, if none of the above actions feel within your reach, you can still encourage individual parents and families of the babies you look after, to spend as much time as they can cuddling their babies on the unit, and encourage them to do the same once they have their babies at home, explaining the many benefits of keeping their babies close.
As for my big plans of going backpacking with my daughter? We were fortunate to successfully establish breastfeeding at the end of our NICU stay, and a few months after our NICU discharge, we were able to set off for a four-month backpacking trip around Ecuador, Peru, and a small part of Bolivia. My daughter spent much of that time in her sling, hugged against my chest, making up for lost time.
Bliss, the charity that works for premature and sick babies in the UK to have the best chance at survival and quality of life, has been campaigning during the COVID-19 pandemic, based on the research and evidence of the risks versus the benefits to babies, for parents to continue to have access to their babies. Read their position statement here. Please consider signing up to the Bliss e-newsletter for health professionals.
There is also a global campaign, ‘Zero Separation: Together for Better Care’ run by GLANCE, the Global Alliance for Newborn Care, also in response to the COVID-19 pandemic
About the pictures in this article: Gwen started talking to her daughter about her NICU stay at the beginning of 2020, thinking it would be helpful. She was prompted by both a talk by Ray Castellano on perinatal trauma and questions around her daughter’s jealously of her younger brother and her perceived position in the family. Since then she has discovered that her daughter has been both sad and angry about her separation from Gwen at birth, and she drew the pictures above when she found out Gwen was writing this piece.
After further conversations with Gwen about funding and how healthcare systems work, she now wants to speak to those in charge of these policies and funding and make a difference for babies and families in hospitals across the country.
1) Campbell-Yeo ML, Disher TC, Benoit BL, Johnston CC. Understanding kangaroo care and its benefits to preterm infants. Paediatric Health Med Ther
3) Aces Connections blog containing interview excerpts from Krista Tippet’s On Being podcast interview with Resmaa Menakem, author of My Grandmother’s Hands
4) Chapman, G, & Campbell, R. The 5 Love Languages of Children. Moody Press (2012)
5) Eliss MA, Hughes K, Ford K, Rodriguez GR, Sethi D, Passmore J. Life course health consequences and associated annual costs of adverse childhood experiences across Europe and North America: a systematic review and meta-analysis. The Lancet
6) Bergman NJ. The neuroscience of birth – and the case for zero separation. Curationis, Vol 37, no 2, a 1440. 2014.
8) Kim AR, Kim SY, Yun JE. Attachment and relationship-based interventions for families during neonatal intensive care hospitalization: a study protocol for a systematic review and meta-analysis. Syst Rev. 2020
9) Sleep Matters: The Impact of Sleep on Health and Wellbeing. Mental Health Foundation.
10) Mauder, RG, and Hunter, JJ. Attachment relationships as determinants of physical health. Journal of the American Academy of Psychoanalysis & Dynamic Psychiatry