I’ve tried many times over the years to find the words to describe how it feels when your newborn is put in an ambulance and you fear, not that he may die, but that he may die without you.
But there weren’t really words to say how I felt nearly nine years ago when I was told our son, Danny was born with a heart problem. Doctors at the Jessop Hospital initially thought his condition was untreatable but they emailed his scan to Leeds General Infirmary, our local children’s cardiac unit, where specialists confirmed his serious heart problem was operable.
Danny was born with coarctation of the aorta, a narrowing in the major vessel which takes blood to the rest of his body. He also had a malformed heart valve. Another was leaking. This was why his scan looked so grim.
Relatives can’t travel in the ambulance to Leeds. With an incubator and a nurse to monitor your baby there simply isn’t room.
I felt like clinging to the roof. I knew he was being cared for but Danny wasn’t with his mum and Leeds seemed such a long way away.
All I could do was ask them to take good care of my baby.
When I arrived at Leeds doctors had just completed another scan. There were so many wires and tubes a nurse had to hold them out of the way while another passed Danny to me.
I didn’t know exactly what the future held, but we were together and I had a word now for how I felt: hope.
Now under a review of children’s cardiac services that journey, long as it seemed then, will be longer still – not to Leeds but to Newcastle or Liverpool.
The ‘Safe and Sustainable’ review of England’s 11 children’s cardiac units recommends fewer, larger units and Leeds is earmarked for closure. This means children and babies will have to be transported hundreds of miles further before they reach the specialist care they need.
When Danny was in Leeds, we were able to stay in a family room so we could be near him. I was able to feed him; our daughter could still pop back with dad to Sheffield for nursery and playgroup so her life could go on as normal. Friends visited us in Leeds and helped with things at home.
Danny underwent heart surgery when he was a week old and is now a healthy nine-year-old. He celebrated his birthday on Sunday with a swimming party.
In the days before and immediately after his operation I became obsessed with the fact that he had never seen the day (you can’t see the sky from the unit and I realised Danny had only ever seen a hospital and the inside of an ambulance). In the moments when I feared he would not make it I planned to take him outside to see the sky.
Eventually I did. The day we left I paused under the bluest skies, amazed and grateful beyond words that miracles could happen here in Yorkshire.
My son got to see the sun, thanks to the work of an amazing group of people in a hospital ward in Yorkshire and a fantastic community in Sheffield. I never thought I would see the day when this would be under threat, when children like mine would have to travel hundreds of miles for treatment and families have to manage the darkest days of their lives without the support of their families, friends and communities.
I know families in Newcastle and elsewhere feel the same and it’s cruel to have to battle it out with other cardiac units, but we must.
So far over 20,000 people have signed an online petition to save the Leeds unit.
And we need more support – from people who have never needed this amazing unit and hopefully never will.
Find the petitions at www.chsf.org.uk/save-our-heart-surgery-unit.