“It’s okay to feel scared and confused, or even angry” - Tim’s story

My boys, Thomas and Luke, were born unexpectedly and very suddenly at Hull Royal Infirmary at 26+6 weeks. They weighed two pounds each and spent almost four months in hospital moving from intensive care to high dependency, then into special care and, eventually, home on 31st December 2010.

Both were very poorly: Luke contracted NEC and had a live-saving operation at eight weeks. Thomas had a brain bleed which has resulted in cerebral palsy which affects his co-ordination, balance and movement. He wears splints and uses a wheelchair for long distances.

We were given one of the parents’ bedrooms at the hospital when they were first born and again when Luke contracted NEC and was recovering from his operation. He had 30cm of bowel removed and had a stoma for a few months before his reversal operation.

I used to dread hearing footsteps outside the room, fearing that it would be someone coming to give us bad news. Things got really serious with Luke following his operation, but thankfully he pulled through. In fact, one night shortly after his operation, he was getting really distressed and pulling at his CPAP mask – it looked like it was hurting him.

To give him some respite, the intensive care nurse just lifted the mask away from his face a tiny bit, expecting his SATs to drop. They didn’t, so she moved it away a little further – again, no change. Further away again – same result.

Luke didn’t need any ventilation or breathing support again after that night. He was telling us that he was winning the fight!

They’re now aged eleven and they’ve both just achieved Grade 8 in drums. Thomas only started drumming in the first lockdown, but before that he’d never played drums. Luke started playing three and a half years ago in late 2018, but it wasn’t until I took him to a gig in late 2019 that he really got interested in it.

Their teacher and other local teachers are confident that there’s never been a pupil in the East Riding that’s achieved Grade 8 drums at primary school, never mind two identical twins, nor anyone that’s done it in just two years.

They both work incredibly hard at it. They play every day, often starting before 7.45am. Suffice to say we have a noisy house! They both have the ambition of being a pro drummer and whilst they don’t go looking for recognition or pats on the back, they love it when they happen.

Both Thomas and Luke are now in bands via the local authority’s ERock programme. The other guys in their bands are much older and about twice their size!

All I can really say to parents with premature or sick babies in hospital is that it’s okay to feel scared and confused, or even angry. It’s okay to shiver when an alarm goes off and okay to feel relieved when you find out it’s not your baby.

I found that talking to other parents helped. You’re all in the same boat and all feeling the same things, whether you show it outwardly or not.

Prematurity doesn’t care about background, race or wealth. Believe it or not, I’d find myself laughing with other parents, which seems strange given the circumstances but it really helped me to cope with what was going on.

The only other piece of advice I would give is that it’s okay to ask questions. Sometimes the doctors and nurses might not be able to answer you straight away but given a bit of time they should be able to. Doubt and uncertainty eats away at you – or it did with me – so don’t feel bad about asking for more information if you think you need it.

I just thought that our story might provide some optimism or comfort for people whose situations I recognise all too well, despite it now being over a decade ago.