Real life: We shared our grief with the world
hayley Jackson, 32, was determined to make a difference – and she has…
Grasping the sides of my hospital bed, I took one final breath and pushed. In the corners of the room, two cameras whirred, their expectant lenses on me as I brought my gorgeous baby boy into this world.
I knew exactly how this scene was supposed to play. I’d been waiting on it, that reassuring newborn cry. But when it didn’t happen, I refused to give up hope…
People often ask why I decided to appear on the Channel 4 show One Born Every Minute. And contrary to what they might think, it wasn’t to become a celebrity. My partner Pete and I would have given anything to have a run-of-themill birth. But from the moment we discovered our baby had a life-threatening condition, one so rare that even the hospital didn’t have leaflets about it, we knew we had to do something to stop other parents feeling as adrift as we did.
I was working as a bank adviser, while Pete was a labourer, when I found out I was expecting in 2011. Most days, Pete would send me a message on his lunch break to check I was feeling OK – and I was. My pregnancy was textbook right up until the 20-week scan revealed that our unborn son had congenital diaphragmatic hernia (CDH) – a birth defect of the diaphragm. It meant he had a growing hole in his diaphragm that could leave him with respiratory problems.
‘He only has 50% chance of survival,’ the doctor said. ‘If I were you, I would consider a termination.’ His words came at us like a round of bullets, each hit more debilitating than the last.
‘But there must be something we can do?’ Pete asked tensely, his whole body shaking beside mine.
The doctor explained he could refer us for a consultation at Leeds General Infirmary, but with so little information available about the condition, they couldn’t even offer us a leaflet to take home. So later that night, we scoured the internet, and even joined the CDH UK Facebook page.
Over the next week, while we waited for a specialist appointment, I pored over stories of babies who didn’t make it. We had no idea what the outcome of the appointment at Leeds would be, but as we both sat in the waiting room, consumed in thought, a woman approached us and introduced herself as a television producer for the Channel 4 series, One Born Every Minute.
I’d watched the show before. I knew it always had a happy ending. ‘Our baby may not survive, so you probably don’t want to film us,’ I said. But instantly the
‘his words came at us like a round of bullets’
woman’s eyes softened. ‘I’m so sorry,’ she said, before asking us about CDH.
‘Perhaps if we could raise awareness of CDH, we could stop other parents feeling so unsupported,’ she said. Her words chimed with something inside me. Turning to Pete, I could see he felt the same so we took the producer’s number and agreed to call once we’d had a think. Suddenly, the nurse was calling our name…
Lost hopes
I could tell from the low hum of the consultant’s voice it was bad news. As he explained that the CDH was on the right side of our baby’s diaphragm, which lessened his chances of survival to just 25%, my shoulders slumped with despair.
It didn’t change our determination to carry on with the pregnancy, though we
would need fortnightly scans from now on, but in spite of that, the producer’s offer played on my mind. Finally, after two weeks, we called to say we’d like to be filmed. For the next few months, while I continued to have scans, we met with the film crew, who recorded us talking about CDH and what it meant for our baby.
Then at 38 weeks, in July 2012, I went to Leeds General Infirmary for my planned induction. It took three days for the labour to start properly, during which time I’d got to know the crew. Even so, I’d never imagined giving birth for the first time in front of a camera.
‘You can do this,’ Pete reassured me as I prepared for the final push. But when our son arrived, the silence was deafening. Immediately, he was wrapped up and taken straight to intensive care.
‘What’s happening?’ I cried, but the midwife reassured me he was being worked on. Meanwhile, a hand grasped mine on the other side of the bed. At first I thought it was Pete, but when I looked, I realised that it was one of the camera women, tears glistening in her eyes. ‘You did so well,’ she choked.
Hours later, I saw my baby for the first time, covered in wires and masks, but he was beautiful, at a healthy 7lb. We decided then to call him Kaiden, which means fighter.
We were hoping doctors could perform an operation to fix his diaphragm. However, at six days old, we were given the devastating news that our son wasn’t going to survive. ‘I’m sorry, but we can’t do anything for him,’ a consultant said. Of course, we were distraught. As the nurses unhooked Kaiden from his wires and placed him in my arms, I cuddled my baby closely for the only time. Breathing in his sweet scent, I savoured every moment until his heavy, little chest finally stilled.
Saying goodbye
Two weeks later, we buried our son in the baby garden at our local crematorium. Seeing the other graves of people who had lived a life, my heart ached that Kaiden hadn’t even had a chance.
I was so consumed in grief. But when the show’s producers came to visit, they were very respectful. ‘It’s completely up to you, if we show the footage,’ a producer told us. They’d never shown the loss of a baby on the programme before and I realised what a landmark it would be for the show – and for us. ‘I want to do this, for Kaiden,’ I told them.
The following March, Pete and I sat down to watch the birth of our beautiful boy on TV. As Kaiden’s little face flashed on the screen, we both sobbed and held each other. So many people contacted us to offer their sympathy afterwards. It was comforting to know that we weren’t alone.
It wasn’t until three years later that I fell pregnant again. Although we were happy, Kaiden’s loss still loomed over us. ‘What if we lose this baby too?’ I asked doctors, terrified. But we were reassured that the condition Kaiden had isn’t hereditary; our boy had just been unlucky.
My 12-week scan confirmed our baby was perfectly healthy, but still anxious, we paid for a couple of extra private scans to help put our minds at ease.
In January 2016, Noah was born by C-section, weighing 9lb 10oz and every inch of him was perfect. As I cradled his little body, I kissed his head and told him how much I loved him. He looked so much like Kaiden, with the same bright blonde hair.
He’s two now and is such a healthy, happy little boy and we tell him daily about his big brother. Perhaps when Noah is older, we will let him watch the video of Kaiden being born. But for now, I like to think that Noah was a gift from him – his memory will live on through his little brother forever. For more information about CDH, go to cdhuk.org.uk
‘I cuddled my baby closely for the only time’