What Neonatal Leave & Pay would have meant to my family
James Buckley was born at 23 weeks and is now 20 years old
The diary entry reads 2 March 2002.
‘Just got back from evening visit with James. Everything seems more familiar. Came away feeling happier and calmer, but tears are always there too. It's hard to leave him.’
The next day?
‘AM: Visit - James is the same. I gave him his first feed in a 0.5ml syringe – hardly anything – just to try and kickstart the whatsits in his tummy. Hopefully he won't reject it. He's having another brain scan this PM. John [my father] took several photos of him with the digital camera.’
My name is James Joseph Buckley and I was born at 23 weeks on 28 February 2002. Above are extracts from my mother's diaries (spanning from 2002 until 2008), which were written after I was born. Flicking through them, I understand the desperation, heartache and sadness that she must've felt.
Complex challenges
James with mum Penny in neonatal intensive care in 2002
I had a grade 2 brain haemorrhage, chronic lung disease from being on a ventilator for over a month, an open duct in my heart which was refusing to close naturally, around 20 blood transfusions and sepsis. When I barely weighed 2lb (907g), I had an eye operation because I had retinopathy of prematurity (ROP) which, if not corrected quickly, would lead to detached retinas and blindness. A longline inserted at my ankle and running through my body to my chest got stuck, requiring a trip to another hospital and an operation with multiple incisions into my leg to find and then remove it. The scars are still there 20 years later.
Never-ending prematurity journey
I left hospital on 12 June 2002. Some might think that's where the prematurity journey ends, but I feel that it's still ongoing.
I started primary school in 2006. The entry for 12 September 2006, concludes:
‘Oh my little pickle, I hope that your school days are exciting and fun. I hope you fit in and have a wonderful time and can cope with it all.’
This was not to be! Over three years, my mother became increasingly frustrated and upset with the extremely unhelpful and egotistical SENCo (Special Educational Needs Co-ordinator).
‘We had a meeting for his first IEP [Individual Education Plan] this week. Parental contributions are meant to be valued. SENCo wrote the IEP without any reference to my suggestions. I’m the one who knows my son and his complex needs the best and my input is totally disregarded.’
The SENCo problem would continue until 2010, when the whole senior leadership team was replaced. The rest of school was much easier after that happened.
It wasn't all bad news though. According to the diary, I was in floods of tears on 26 January 2007. The reason? Being ‘taken out of the bath for flooding the floor (having been warned).’ My excuse? "I'M A SUPERHERO."
‘Superhero’ James, aged five, in 2007
Why parents need more time
The Neonatal (Leave and Pay) Bill passed its third reading in the House of Commons on 20 January 2023 and will now progress to the House of Lords. But what would it have meant if it were law when I was born?
James’s mum took 18 months off work to care for her son after months in neonatal intensive care
At the time of my birth, my mother, Penny, was a teacher. Her boss – well ahead of her time – told her that she ‘could take as much leave as she needed.’ Mum took a year and a half, from February 2002 to September 2003. This comprised six months of paid leave, six months unpaid compassionate leave and six more of sick leave. My dad, John, is (and was, at the time) working as an electrician and general builder. We moved into our current home in July 2002, and most of Dad’s time was spent making the house – an old nursing home – more like a home. My parents also had my siblings (at the time aged nine and 13) to look after. The diary says nothing on moving in, but it does document my favourite word at the time: ‘Nying!’
A Bill of hope
Other mothers may not be so lucky, which is why the Bill is so important. If Mum’s boss hadn’t been as radical in her views on parental leave, my mother would have had to quit her job.
She would have had the standard six months of leave, returning to her job in August 2002. At this point I’d been out of intensive care for two months, but Mum ‘still didn’t know if I’d survive’. She would have left work to look after me and we would have probably needed to move house (the mortgage payments couldn’t have been repaid on one income).
“If Mum’s boss hadn’t been as radical in her views on parental leave, my mother would have had to quit her job. This is why the Bill is so important.”
To me, this Bill means hope for all the parents of premature children out there. Although we were lucky, luck shouldn't have to be something you rely on, especially in the current cost of living crisis. The Bill will remove an additional worry from parents’ minds and give them a better start. The road to where I am now definitely wasn't easy (and it won't be for them either), but the journey has made it more than worth the while.
Thanks to James Buckley for sharing his story.