What we can learn from parents of premature babies

As part of our aim of raising awareness of premature birth, we spoke to parents and families to learn more about their experiences. Here is some of the advice and insight kindly shared by those parents of premature babies.

This year, we’ve been working to increase awareness and available information around premature birth. As part of this, we spoke to over a thousand parents who have gone through premature birth to find out more about their journey.  

This led to some illuminating statistics, such as most (56%) parents telling us they felt guilty, or like they had failed (54%), after their babies were born early. Around three-quarters (73%) told us that other people didn’t understand what they were going through, and half (53%) didn’t even have the information they needed to understand what was happening themselves. 

We also heard first-hand from some families about their own experiences – in many ways completely unique, but also sharing some common themes. Here is some of the advice and insight kindly shared by those parents of premature babies. 

Don’t overlook the impact on your mental wellbeing  

Many parents found the experience of premature birth and supporting their baby or babies in NICU (neonatal intensive care unit) extremely difficult, and at times traumatising. The importance of looking after your mental health, and that of your partner, is crucial.  

Kerrie, who gave birth to her daughter, August, at 26 weeks, is still feeling the effects of her experience many months later.  

"I can talk about it all now without getting upset but I still suffer anxiety and PTSD about her birth which surfaced when I had a panic attack in the hospital and thought I was dying.” Kerrie 

Navigating your own mental health while caring for your baby can feel overwhelming at times, so don’t be afraid to ask for help and advice – whether it’s speaking to your doctor, midwife, a counsellor or your partner. Our Tommy’s midwives also run a support line which you may find useful to contact. 

Take each day as it comes, and manage it in a way that’s best for you 

One of the most common phrases used to describe life with a baby in NICU is that it’s ‘an emotional rollercoaster’ – so much can change day to day and even hour to hour.  

While some NICUs have facilities for parents to stay day and night should they choose, this is not always possible, or practical, for everyone. Whether you have other children to look after, live miles away from the hospital your baby is in or simply feel shorter visits are better for both you and your baby, this is completely your choice. This was the case for Jenna after her son was born at 25 weeks, and she knew she’d made the right choice for their family. 

“We visited him in hospital every single day for a few hours but we didn’t stay and there was some judgement about that. We just felt he was in the right place with the right people. He needed to sleep and get stronger as if he was in my womb where he was still meant to be.” Jenna 

It’s normal to be scared when your baby comes home 

While it might be the moment every parent is counting down to, the day your premature baby is finally discharged from hospital to be cared for at home can still feel overwhelming. 

“It’s important to know the neonatal journey doesn’t end when you leave NICU. It’s been hard and challenging even after coming home. In hospital he had the best care from amazing professionals, at home it was all on Mike and I which was immense pressure, a huge weight of responsibility and so much guilt too – that you should be enjoying him being home, but it was so hard.” Sophie 

Alongside speaking to your midwives, specialists and other healthcare providers, you can find information on life after NICU on our website if you feel you need a little extra reassurance.  

You are not alone 

So many families we spoke to mentioned that they found comfort in speaking to or reading about other families going through similar experiences, and hoped they’d be able to offer that to other families in future. 

“I feel lucky in so many respects, I have a great family but if I’d known one other person in a similar situation to me I’d, perhaps, have felt more equipped to deal with it mentally... My biggest hope is that our story offers comfort to anyone going through what we went through because it’s a traumatic event that can leave you feeling very lonely.” Rebekah 

Caroline, who gave birth to twins Zack and Finn at 26 weeks, wanted to share her story to raise awareness of her experience after Zack was diagnosed with cerebral palsy. This was to offer that visibility for other families that she struggled to find herself.

“I’ve read many stories about people in our situation but you rarely hear from parents with one twin who is disabled, we are like a hidden society so I want to try and show other parents going through this that they are not alone. And that there can be a happy ending – because we are a happy ending!” Caroline 

Did you know that some premature births can be predicted, which means we can potentially prevent them, saving babies’ lives?