It is one thing to bemoan the status quo, another to try to propose potential improvements.
In Part 1 of this blog, I laid bare statistics that show increasing preterm birth rates and highlighted a concern, based on our own lived experience, that there is insufficient awareness about what it is to have a baby early, and the lack of support parents often feel.
In this brief second part of the discussion, I give you my observations of possible ways in which things could be done better.
Pre-natal classes could be made available earlier in pregnancy and they could include discussion about premature birth and what happens in a NICU.
For example, a friend told me about a fantastic UK-based service (albeit a paid one, and therefore not accessible to all) called Noobies. Her prenatal classes with Noobies ran over a 7 week period and started at 30 weeks.
In this course, as she explained it to me, the possibility of giving birth early was contextualised in a discussion about birthing plans. The premise was that while you may have an idea in your mind of the perfect birth, you need to be aware of the reality of all the ways in which babies can come into the world. They did a role play where everyone on the course played a different part in different types of births, including an early birth. This was aimed at improving understanding of what the experience would actually feel like, from an easy and natural birth to a very complicated one.
They also had a session about the NICU – its role, what all the medical equipment is for, that you may be separated at birth from your baby etc. They even briefly touched on some of the challenges for babies that follow premature arrivals.
I would suggest that this type of approach provides some mental preparation for all eventualities without being alarmist or causing maternal anxiety.
Each NICU could facilitate the establishment of a parents’ support group, or at the very least be able to refer parents to other community organisations that provide this type of mentoring. I believe that being able to talk to other parents can be very impactful. They are the only people who can understand what you are going through. I found an excellent article (Hall, Ryan, Beatty & Grubbs, 2015) proposing exactly this idea, with recommendations not only to offer “peer support” from what they describe as “veteran” NICU parents, but also training for these mentors.
Fathers often suffer a significant emotional toll and sense of helplessness, and I don’t think this issue is given enough attention. The broader long term impact of excluding fathers should not be underestimated and more thought needs to be given to how they can be better supported. Watch this space for a future blog (from a guest contributor) on the topic.
More parent to parent information. Trawling the internet will yield lots of dry, factual, medically-oriented information. You will probably also find many miracle baby stories. What you don’t find too many of is honest lived accounts of difficult experiences. That’s why I found Hand to Hold so helpful. We need more of this. SuperLily is an effort to try to bring unsaid parents’ perspectives to the surface.
Spread the word, create awareness. This blog is my first attempt at doing just that. Please share it!
Please also share with me your experiences of the NICU of useful resources or communities or support networks that helped you get through the darkest NICU days.
COMING UP NEXT – THINGS I LEARNT WHEN MY PREEMIE CAME HOME
 Hall, SL, Ryan, DJ, Beatty, J & Grubbs, L (2015). Recommendations for peer-to-peer support for NICU parents. Journal of Perinatology, 35, S9-S13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694192/
2 thoughts on “WHY WE NEED TO TALK ABOUT PREMATURE BIRTH – PART 2”
Your darling Lily is getting on so beautifully and Many people will benefit from sharing your journey. I find all the information that you are sharing so interesting.
Sending you and Lily lots of love from me and the whales…
Annie and Carl XXXXXXX
Ann and Carl, thank you so much for your very kind comments!