James Melville-Ross, above right, with wife Georgie and Dr Tim Watts, officially opened the expanded neonatal unit at Evelina London children’s hospital on Tuesday evening. This is his speech:
My wife Georgie and I first came to this hospital in August 2003 when our twins Thomas and Alice were born. They were born early, at 24 weeks, and they weighed just a pound and a half each. The doctor said that they had a 20 per cent chance of surviving.
During those first few days, everything that could go wrong did go wrong. But every time they were saved by the amazing people who work in this hospital – people like Grenville, Tim and Caroline who are here this evening.
Alice had four heart attacks on the first night and they resuscitated her with adrenalin shots.
On the second day there was a power cut across the whole of the South East of England knocking out the machines keeping our babies alive and they battled to save the children’s lives with hand oxygen pumps.
Then, on day three, Thomas’ lungs filled with blood and they asked us if we wanted to have him baptised because he was going to die within the next twenty minutes. But again they managed to save him.
When Thomas nearly lost his life with a severe case of necrotising entercolitis – Tim, are you impressed that I remember how to say it? – you saved him again. Collapsed lungs, superbugs, brain operations, heart operations, you saved them every time.
Fair to say not the start to parenthood, either of us was expecting. We felt completely powerless. One of the consultants, Bal Sharma, said to us we must talk to them and love them – they grow stronger knowing you are there supporting them.
We took him at his word and I remember whispering promises through the portholes of their incubators. “You have to hang on, I promise I will give you the best life. We’re going to have so much fun together. My promise to you. If you fight to survive.”
And survive they did. After nine months here at Tommy’s they came home to huge celebration. That they did is down solely to the dedication of the staff here. I wrote a letter – somehow thank you didn’t really cover it, but words were all we had…
Thank you for getting Thomas and Alice out of the starting blocks and for giving them a chance at life. Thank you for giving us a glimmer of hope when all hope seemed to have gone. Thank you for bringing light into some very dark moments. Thank you for always knowing what to say and for having the courage to say it. Thank you for never trying to make it sound better than it was. Thank you for helping us to stay positive throughout. Thank you for the hugs and the shoulders to cry on. Thank you for the love and dedication you gave to our twins. And thank you for enabling us to realise the gift of parenthood.
Within a week of taking them home, we were back into A&E after I dropped Tommy on his head in the kitchen. As Darcy, one of the NICU nurses said when he saw us, “we’ve spent nine months saving their lives. You’ve been home five minutes and you’re chucking him on his head.” What a disaster.
The story doesn’t end there.
The effect of those early setbacks was that the twins have a condition called quadriplegic cerebral palsy. They are largely incapable of independent movement and are reliant on adult support for every element of daily living – washing, dressing, feeding and so on. Thomas is also profoundly deaf. BUT cognitively they are all there – they understand everything and are the smiliest kids you could hope to meet.
We took a while to reconcile ourselves to this setback after everything that the twins had survived, it seemed so unfair. It’s fair to say a bit of sulking and moping went on. How the hell were we going to cope with not one but two severely disabled kids? There’s no instruction manual for that.
Then I remembered the whispered promises I had made to the twins through their incubator doors. I had promised them that if they made it I would give them the best possible life.
We needed to get off our backsides and give the twins some great experiences.
Which is how Tommy and I ended up running in our local 10k together with 1,000 other runners – me in my trainers, him in his wheelchair – and he slaps the bum of a lady runner as we overtake. She looks round in surprise and I’m pointing at my son, saying, ‘it was him!’ and then I see the disgusted look in her eyes that says ‘you smacked me on the arse and now you’re blaming the disabled kid’.
Or some of the moments I’ve had with Alice… For years, I’ve been tucking her into bed every night and telling her how much I love her and she has told me with her eyes that she feels the same, but hasn’t been able to say those words. And then, suddenly one night, after ten years, she raises her head from the pillow and with laser-like focus says the words, “I love you, Daddy”. She then laughed when she saw the tears dripping down the nose of her pathetic father.
Or the time when we got their powered wheelchairs for the first time and Tommy rammed into his eighteen month old sister – because he could. For the first time in his life he wasn’t being pushed in a wheelchair and he could go where he wanted – and where he wanted was to drive directly over his annoying younger sister. (Actually, if we could keep that story to these four walls I’d appreciate it… We have enough visits from social services to deal with…)
The first time they rode a horse, the first time they went skiing, the first time they did rock climbing. Yes, you can do rock climbing in a wheelchair.
Or the time when Tommy had his hearing aid switched on and lifted his head when he heard his name for the first time.
The point is, these experiences would never happened if it hadn’t been for the dedication of the NICU team here at Tommys. We would never have been able to fulfil our promises.
It’s a huge honour to be part of today’s celebrations and to get the opportunity to be able to say thank you to this hospital and its incredible people. They are the heroes of this story, as much as the twins.
Without the amazing staff here, our story would have only been one page, instead of chapters full to the brim with new experiences and laughter every single day. We will never, ever forget what you have given us, the joy that we have as a family.
But we are also aware that we are the lucky ones. Sometimes there just aren’t enough beds to go round, sometimes the most vulnerable, most tiny babies don’t get this urgent care. That’s why today’s increase in critical care, intensive care and isolation cots is so important. So that everyone gets to have the experience that parenthood brings.
So thank you. Because of you, Georgie and I get to experience what it is to be a parent.
And the lessons our twins teach us every single day make us grow as people. They are better human beings than I could ever hope to be. We are just so grateful that we were given the chance to get to know them.