Thank you NHS and Royal Bolton Hospital

As World Prematurity Day approaches, I have thought about whether to “publicly” celebrate it this year, mostly because I am worried that people will be bored of hearing about our “journey” and how proud we are. However, almost four years on from having my twins, Ted and Harriet, at 26 weeks, weighing 1lb 14oz (850g), I still believe it’s extremely hard for other people to understand unless they’ve been there. So I thought I would try, to raise awareness and understanding. It only takes a moment of reflection to realise that all premature babies born into this world, their families and the incredible NHS truly deserve a day of recognition.

An unnatural beginning

Having your baby taken away from you the moment they enter this world, is one of the most unnatural things to happen after birth. I returned to the maternity ward feeling completely numb, feeling I had lost something, but didn’t know what. I met my children the following day and immediately my hand cradled my stomach, where they had safely been just the day before, and should have remained for nearly four more months.

The weeks and months that followed passed in a bit of a blur, I remember feelings and snippets more than anything, so I will try to summarise…

Responsibility, anxiety and guilt 

I felt overwhelming responsibility for my children, but I did not get that ‘rush’ of love people talk about. This is by far the hardest thing to write about, but in some ways, the most important. Because I felt like this weighed heavily on me for such a long time, isolating me from ‘parent groups’ because I couldn’t face feeling like the worst mother there. I tortured myself for such a long time about this. The overwhelming feeling at the point of meeting my children was a tidal wave of aching sympathy for them; guilt, fear and sadness. I felt pain and guilt looking at them so vulnerable and tiny, hooked up to so many wires. I wanted to swap places with them instantly. I longed for them to survive. This was the rush of love I felt. Not the typical rush people like to reference. And it took time for them to feel like they were my children. Speaking to other preemie parents, I’ve found that this is quite normal. But no one talks about it. And is probably a contributing factor to the mental health issues parents can face later down the line. Two years after my children were born, I sought professional mental health support, following a diagnosis of PTSD, anxiety and depression. If anyone needs to take that first step and needs support, please reach out, you won’t regret it.

Fear

Every single day brought new fears. My children experienced bleeding on the brain, ROP (Retinopathy of Prematurity) checks for blindness, NEC (Necrotising Enterocolitis – a life-threatening bowel condition), sepsis, collapsed lungs, prolonged intubation and breathing support, holes in their hearts, blood transfusions, infections, lung disease… the list feels endless. We spent three months petrified that our children would die. Harriet was extremely poorly and we were advised to expect the worst. She was rushed to another hospital, separated from Ted. For four weeks we were facing the real possibility that she may die – this part of the journey was utter agony. We were also scared to take our children home, which sounds odd, I know. Everyone expects you to be completely over the moon – and we were, to an extent. We were so relieved and so grateful that we could finally be a family, but after three long months, we were now on our own. No more alarms to tell us when their oxygen sats dropped. No more blood gases telling us what their infection markers were. No more nurses telling us how they had ‘behaved’ during the night. No more safety net. We were scared.

Deep appreciation and gratitude 

I’m grateful for the NHS, for choosing the Royal Bolton Hospital as our birthing place. The neonatal nurses and doctors there are utterly amazing, and deserve so much respect and appreciation. They are experts, extremely hard working, patient, meticulous and so caring. They seamlessly intervene when there is a very fine line between the life and death of your child, and then they do all they can to make sure you, the parent, are coping. They are educators, teaching you how to spot warning signs, how to translate medical jargon, how to read monitors, how to feed, cleanse, change and comfort your fragile child. It takes a very special person to do this job day in and day out. We feel a deep appreciation that we could never really convey.

Love, pride and happiness 

The day I was able to hold my children, skin-to-skin, for the first time at two weeks old, was the happiest day of my life. The days we would read books and sing to them through the portholes of their incubator, and their eyes would flicker and their hands move – showing us that they recognised their Mummy and Daddy, was incredible. I can’t describe the extreme relief and pure joy we experienced the day we were told that our very courageous and inspirational daughter had survived her battle, could be reunited with her equally inspiring twin brother, and we could go home together, as a family. 

Time to celebrate the heroes

Honestly, I wouldn’t change it. I feel entirely blessed and honoured that I’m their mummy. I love them with every fibre of my being. They make us proud every single day. The preemie experience taught me more about love than I’ve learned in the last 30 years.

If ever there was something to be celebrated, it is how these tiny, heroic, incredibly brave babies get through this. They withstand more medical intervention, pain and struggle than I’ve ever witnessed an adult survive. They are phenomenal. It is right to celebrate them every year. And raise awareness of how much support neonatal units need in order to support preemie families and ensure that every baby born too soon has the very best chance of survival and goes home, where they belong.

Happy World Prematurity Day to every single miracle out there, and their equally wonderful miracle workers!

Thanks to Amanda Buck for sharing Ted and Harriet’s story.