World Prematurity Month 2023: Why I'm proud to fly the flag for dads
Life changed on 5 October 2015. My wife Sally was 25 weeks’ pregnant with twins and we’d just been having a normal weekend with our three-year-old daughter, Isabelle.
When Sal started to feel unwell and, in some discomfort, we were advised to head to our local maternity unit in Dudley. Before we could think, an ambulance had arrived and we were heading to Coventry (although I got to the hospital by car before the ambulance!). It was around 6am and, after making a couple of calls to work and family, Sal started to get really uncomfortable. Then very quickly, Sam (below, left), all 1lb 12oz (794g) of him, was with us and 45 minutes later Harry (below, right) followed, weighing 1lb 10oz (737g). It is so hard to appreciate how small they were – they were the equivalent to ¾ a bag of sugar.
Heartbreak
Towards the end of Week Two in NICU, we were told a bleed on Sam's brain had grown and he would most likely develop cerebral palsy. They were struggling to keep his blood pressure under control and his breathing supported; the next 48 hours were critical. Sam survived those 48 hours but the following day he deteriorated again and we had to make the awful, heart-breaking decision to switch off his life-support machines. He passed away in our arms later that morning.
A long journey
Harry ended up spending 107 days in the neonatal unit, across two hospitals, with various health challenges, including time on oxygen at home, two laser eye surgeries and support from a number of professionals. Following lots of ongoing professional input and several re-admissions he is now a lively eight-year-old who enjoys school and playing with his friends.
My premature rockstar
I became aware of The Smallest Things back in 2017 when the charity launched the Red Book sticker campaign as a very simple but brilliantly effective way to let professionals know your child was born prematurely. As a prem parent, you get fed up of explaining and sharing your story over and over. It becomes exhausting, and these stickers are a great way to help get the message across. I organised a number of friends and colleagues to run marathons and half marathons as part of team #prematurerockstar and we donated some of the money to The Smallest Things.
Proud to be a trustee
But I wanted to get involved more and help make change happen. I’ve been a trustee for over five years now, with a great group of people. We always say we aren’t normal trustees as we get involved in all aspects of the charity: developing our schemes, talking to partners, organising conferences (in person and virtual), as well as setting our strategy, applying for grants and growing fundraising. We work well as a team because we care. We`re all volunteers so we make the time because we want to.
And we’re starting to see the fruits of our labour. It’s great to hear from parents whose premature child's school has pledged to become #PremAware and are supporting their child, or from families who have benefited from additional leave to be with their child as part of #EmployerwithHeart.
#DadsdoNICU
People always say ‘it’s good to talk’ but that’s not a normal thing for us ‘blokes’. I think being open is the best way to look after your family, and talking through ways to support you and your family can also improve your own mental health. The Smallest Things has a #DadsdoNICU campaign to encourage dads and partners to share so they feel less alone. We believe it’s important to encourage all us dads with these experiences to open up and support the next dad that will experience this and help them support their family.
We have a growing collection of dads’ stories on our website, and we now have posters (left) in neonatal units to bring this to the attention of new dads going through the NICU experience. A dad's story is often unique as they could have to battle returning to work during a neonatal stay while focusing on their partner but #DadsdoNICU is an opportunity to hear from other dads. By sharing, you can help offer some advice or reassurance to others that might help them feel stronger.
However, all our initiatives are open to dads and support dads and families – we have a number of volunteer Prem Aware ambassadors to champion our ‘Prem Aware’ Award for schools; we have volunteers who help expand our ‘Employer with Heart’ scheme by speaking to employers to improve their parental leave offer; we have volunteers organising fundraising events through our annual picnic weekend or taking part in different challenges, from 5K runs to marathons.
Getting involved and helping each other
As a dad I felt that natural instinct to protect my family, but in the neonatal unit, what can you do? You feel useless. You do what you can, changing nappies or bringing in supplies, but is that it? I kept a list of things to ask the doctors so I could try to bring an element of control back into my life. There is no right or wrong. Should you be crying? Should you be angry? I don’t think either is wrong. I felt I needed to do something practical and still do. I failed to protect my boy, I couldn’t save him. You want your kids to have opportunities in life, but Sam didn’t get any opportunities. I couldn’t protect Sam, and Harry won’t get to know his twin. You get angry but at the same time you want to remember.
Do I talk about it too much and should I move on? I don’t know, but being part of The Smallest Things in his name, I like to think, is his legacy and him having the opportunity to make a lasting difference. While I’ve been writing this blog, another dad has walked into a neonatal unit for the first time, following the trauma of premature birth. I’m doing this for him too.
“The dad’s voice can be really powerful but is often missing. I want to change that. I do this for my boy so has a legacy that lives on and helps others.”
If this is you – or was you recently, or a while ago – please consider one of our different ways to get involved and support The Smallest Things to make a difference for dads and partners. Please reach out to us at dads@thesmallestthings.org.uk and we can discuss more with you. We want to encourage dads and partners to get involved and help each other – by telling your story or reading other people’s, responding to surveys, organising for more places to display Dad do NICU posters, fundraising or helping us grow our initiatives, and challenge those in power to improve services. The dad’s voice can be really powerful but is often missing. I want to change that. I do this for my boy so he has a legacy that lives on to help others with children born prematurely. You will all have your own reasons, but together we can help those who come next, and their children.
Thanks to Matt for sharing Sam and Harry’s story.