September is NICU Awareness Month. In this post, I’ll share some further information about this event, why it’s important, and some helpful resources for families impacted by having children in neonatal care.
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What is NICU Awareness Month?
NICU Awareness Month is a campaign that runs across the month of September, with the aim of raising awareness of neonatal care and honouring those families impacted. The campaign also recognises the selfless and tireless work of healthcare professionals within neonatal units, such as doctors and NICU nurses who care for sick and premature babies.
Throughout the month, there are a number of specific awareness days which highlight some of the themes associated with the NICU and neonatal care, such as:
- Neonatal Nurses Day (15th September)
- NICU Remembrance Day (26th September)
- NICU Giving Day (27th September)
- NICU Staff Appreciation Day (28th September)
- Sibling Support Day (29th September)
- NICU Awareness Day (30th September)
Why do we need a NICU Awareness Month?
It’s really important that we continue to raise awareness of NICU, prematurity and neonatal care for babies. In the UK, 1 in 7 babies require neonatal care after birth – that’s around 100,000 babies a year. Care might be required because of prematurity (being born before 37 weeks’ gestation) or because of illness or complications following birth.
The impacts of premature birth and/or neonatal care can be huge on parents and families, and so raising awareness can help to highlight support networks for those affected.
When my twin sons were born 13 weeks early, I was plunged into an alien world with no pre-warning and no idea what to do. It’s the same for many parents, so campaigns like NICU Awareness Month can help to educate and prepare people for scenarios where their babies may require medical intervention shortly after birth.
Resources for parents of children in the neonatal unit
I know first-hand what it’s like in the NICU. It’s like being dropped into a foreign land, an alien world.
The NICU is like a foreign land or an alien world.
It’s near impossible to get through it without help and support, so here are some helpful resources that may help those going through this experience.
NICU and prematurity charities
There are several large and small charities and awareness groups designed to support neonatal families, including:
- Bliss – the leading prematurity charity in the UK, aiming to give premature and sick babies the best chance of survival. Their website and printed material is really helpful for parents – I found the leaflets to be a real help when my sons were in hospital.
- Tommy’s – a pregnancy and baby charity that also offers support and advice about prematurity and neonatal care.
- Spoons– a neonatal family support charity that provides resources and care for parents and families of babies requiring neonatal care.
- Ickle Pickles– a charity that raises money to buy and donate lifesaving equipment to neonatal units across the country.
- Colourful Beginnings – this movement helps to raise awareness by sharing parents’ stories of the NICU, and donates care packages to families in neonatal units.
- Emily’s Star – a charity set up in the memory of Emily, who sadly passed away days after her birth. The charity raises funds and donates care packages for sick children and their families – we were fortunate to receive their boxes while the boys were in hospital, which contained the premature baby clothing below:
NICU and prematurity blogs
I am using this space to share my experiences as a father of premature babies. And there are several other great blogs and resources you can check out for support.
There are several great blogs that offer support for NICU families
- Bliss – as well as being a great charity, Bliss’s output of helpful information for parents and families of premature babies is second-to-none. They also share insightful stories of other parents’ experiences, which can be really helpful. Here’s an open letter I wrote for Bliss to other dads going through the neonatal experience.
- Presents for Preemies – Lisa and Stacey sell some really nice presents and gifts for premature babies and their families. But they also use their site to share their stories of premature parenthood – well worth a read.
- One NICU Mum – Sonia Smith’s son was born prematurely, and she candidly shares her story in a series of ‘NICU notes’. She’s also written a lullaby book, which is a lovely keepsake for parents and families of neonatal babies.
- The NICU Mummy – Author Sam shares her story of the NICU, and also provides a platform for other parents to share their experiences on her excellent blog. She also runs a hugely popular and helpful Instagram account (see below).
- Miracle Moon – This blog is run by NICU mums Frankie and Georgina, and they share helpful resources alongside the experiences of other NICU parents.
NICU and prematurity Instagram community
Before starting this blog, I had no idea just how big an online community there was dedicated to prematurity and NICU. Instagram has become a great place for me to connect with other parents and share experiences. Here are a few great accounts to follow:
- @the_nicu_mummy – Sam (mentioned above) uses her Instagram to great effect to share helpful information, experiences and resources for parents of NICU babies.
- @mini.milestones – Caroline is a mum of three boys who shares her experiences of parenting. Her twin sons were born at 28 weeks’ gestation, and her account is a really insightful look at life after NICU.
- @georgie_from_nicu_to_now – Georgie shares great updates and memories of her experience as a mum to her 30 weeker daughter, Freya.
- @premdad_uk – a shameless plug, but I share my own memories of the NICU experience and some more up-to-date snaps on the Insta account I run alongside this blog.
- @preemie_adventures – NICU, prematurity, sick babies – it’s hard to be upbeat with this subject matter. But Adam, who runs Preemie Adventures (also the title of his great book), manages to inject some much-needed humour into this area with his regular sharing of memes and funny images.
- @miraclemoon – the Instagram account associated with the Miracle Moon blog, sharing helpful tips, resources and parent stories.
- @nicunatter – a community run by a group of NICU mums, NICU Natter offers a range of support and resources for NICU parents. They also hold meetups and online catchups.
NICU podcasts
When your baby is in hospital, you might not have time to read or browse social media. Podcasts can be a good way to absorb helpful information or take comfort from others’ experiences. Perhaps playing one before bedtime or on your journey to or from the hospital would be helpful.
Podcasts can be a great way to learn more about the NICU
Here are a few NICU-relevant podcasts to check out:
- NICU Stories – Preemie mum Nakiea Wilkinson shares a combination of personal journals and interviews with fellow NICU parents on her podcast. In March 2021, I was invited to share my story which you hear below:
- Miracle Moon – Alongside their blog and Instagram, Frankie and Georgina also share great content through the Miracle Moon podcast.
- Mighty Littles – Mum and neonatologist, Dr. Anna Zimmerman, from Denver, Colorado, shares helpful information and interviews experts on her excellent podcast. The show focuses on the different aspects of NICU life.
- I appeared as a guest on the Mighty Littles podcast in March 2021 to discuss my experience as a NICU dad – listen here.
Help a preemie parent or a NICU family
I’ll never stop saying it: having a baby in NICU is so hard. If you know a family going through this experience, please share this article with them to help them find the support they need.
And don’t forget to download my free ebook!