Our son, Zander, arrived in 2014 and was born at 28+2 weeks weighing just 730g (1lb 9oz). As first-time parents, we had absolutely no idea what a rollercoaster ride parenthood (and preemie parenthood at that!) was going to be.
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The first I knew of World Prematurity Day was when I saw posters about it on the ward of the maternity unit on the day I was admitted to hospital because my waters had broken at 28+5 weeks. At the time, it hadn't crossed my mind that I would be the mum of a preemie because hospital staff were talking about "waiting and seeing" and no way had I considered that I'd be giving birth to a teeny 2lb 10oz (1.19kg) dot just three days later.
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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.
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We asked this question once to my son's heart surgeon after he had performed an eight-hour operation to fix Joshua's tiny little heart and given him the gift of 'life'. His response was simply "You don't need to thank me, this is just what I do! All I want you to do is take him home and give him every experience that you can!"
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On Thursday 15 October, at 7pm, thousands of candles will be lit around the world to remember all the babies who have died. As Babyloss Awareness Week culminates in the Global Wave of Light, bereaved parents, friends and family come together to remember. Each flickering flame represents a tiny soul no longer here, a story of hope that ended in pain, a life not lived, enduring love translated as grief.
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My identical twins Thomas and Luke were born at 26 weeks on 12 September 2010 following an unexpected, premature and rapid labour. They were immediately admitted to NICU where every day became full of bradys, desats, medical procedures and seemingly endless worry.
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Hugo was born at the end of August 2015 at 24 weeks’ gestation. He had a rocky start to life, spending seven months in hospital, being ventilated and needing heart and bowel surgery. In the early days we were worried about his survival and long-term prognosis, but once he came home we started to think about his longer-term development.
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I gave birth to Louie at 31 weeks’ gestation on 6 August 2016 after a spontaneous labour. It all happened very quickly and was very traumatic, but he arrived into the world weighing 4lb (1.8kg) and stayed in the neonatal unit at Leicester Royal Infirmary and Leicester General Hospital for a total of nine long stressful weeks. He finally came home on 5 October 2016.
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In March, I welcomed my second baby boy into the world. He was born a day before the pandemic was declared and 90 days before he was due. That isn't a typo – he was born 90 days early, at 27 weeks’ gestational age. Having your baby prematurely at any time is difficult, but during a global pandemic has made it unbearable.
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As I prepared to be discharged from hospital with my tiny 30 weeker, I kept getting told by the staff to avoid supermarkets. I was completely baffled – were supermarkets really such an awful breeding ground for germs?! I solemnly promised the consultant that I wouldn’t go near supermarkets until Luca’s due date.
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‘Nope. Thanks very much, but I’m alright’. That’s what I said when I was offered a couple more counselling sessions after discharge. What I was thinking was, ‘Are you kidding?! No way. My 24 weeker is coming home after only 12 weeks in hospital. I’m happy. Everything is perfect. I don’t need this. I don’t need another appointment to go to. I just want to be at home with my baby.’
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When you get pregnant loneliness and overwhelming guilt aren’t emotions that you think you are going to feel. You are filled with dreams and hopes and expectations just like anyone else – you feel part of a community. But when you have a premature baby loneliness and guilt are just some of the many emotions that you feel.
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It’s hard bringing a premature baby home from hospital. The journey and worries go on. I’m trying to be honest with myself, I am struggling. Last December my son Bertie was born prematurely at just 27 weeks gestation. I’d had a complex pregnancy with bleeding from 13 weeks and placenta problems.
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