In my experience
Hayley Bolton’s daughter was just five months old when she underwent a double lung transplant. Here, her mum shares her incredible fight for life…
Every breath Imogen takes is a miracle
My little girl, Imogen, is always smiling. at almost two years old, she loves singing along to her favourite Disney film, Moana, and clumsily twirling in her pink tutu at her ballet class. You might think she’s just like any other toddler – but the truth is, she’s already made the history books…
A much-wanted child
My husband Jason and I had been together for three years when I found out I was pregnant. Overjoyed, we shared the news with friends and family – including my older children Aliessa, then nine, and Sonny, six. And from the moment Imogen arrived, in November 2015, she had everyone charmed. Such a calm baby, she was happiest cradled in someone’s arms.
I thought my little girl was happy and healthy – that is, until she was 11 weeks old, and Jason and I took her to be weighed. I can still remember the look of shock on the nurse’s face when she said Imogen had lost 2lb in weight – a huge amount for a baby.
She sent us to hospital, where Imogen was examined by a doctor. After listening to her lungs through a stethoscope, he said that her breathing seemed odd – her tiny chest struggling to rise and fall – and he wanted her to stay in hospital. At the time, I wasn’t too concerned. I knew babies could pick up bugs easily. I thought she just had a chest infection.
Only, Imogen’s breathing seemed to worsen. First, she was given extra oxygen, then she was put on a ventilator. I tried to stay positive, but as I watched the colour drain from her chubby cheeks, I started to worry. Hooked up to machines and wires, she looked so helpless in the hospital bed.
In the weeks that followed, life was on hold while doctors investigated Imogen’s symptoms. I barely slept, I couldn’t eat, and I only left her side to pick up clean clothes from home and have a quick cuddle with Aliessa and Sonny.
It was seven weeks before a consultant asked to meet with us. We were led into a private room and he explained Imogen had a rare illness called alveolar capillary dysplasia, meaning her lungs hadn’t formed properly. At first, I was almost relieved. Finally we knew what was making our daughter so unwell. Only,
as I asked about treatment plans and medication, I noticed a look of sympathy flash across the consultant’s face. ‘We can only offer palliative care,’ he said gently.
Glimmer of hope
As his words hung in the air, I felt my own chest tighten – as though my heart was actually breaking. It was then that the realisation hit me. There was no hope, Imogen was dying. And, as the consultant handed us leaflets about her condition, all I could do was shake my head in disbelief.
In those first few days, I’d sit by Imogen, silently sobbing as I took in every inch of her, as though she might be gone at any moment. But amid my tears, I also began researching her condition, desperate for something – anything – to help. And, as I trawled through articles and medical journals, I found a glimmer of hope. There were children in America who’d been given lung transplants to treat the condition, going on to live healthy lives. If it worked for them, why not our daughter too?
But the doctors didn’t share my enthusiasm. A double lung transplant on a baby so young had never been done in the UK – it wasn’t an option. But I refused to take no for an answer. I continued to research and pester the doctors with what I’d found, until they agreed to a meeting.
It was four days later when the consultant appeared by Imogen’s bedside. As soon as I saw the smile on his face, I knew it was good news – Imogen had been accepted on to the transplant list. You might expect me to have been overjoyed, but I knew some patients spent months – even years – waiting for a transplant. As her life continued to ebb away, I couldn’t help but wonder if we would run out of time.
Only then, a week later, I was at hospital when I received a phone call. ‘We have an organ available,’ said the transplant coordinator. In that moment, the shock overwhelmed me and my legs gave way beneath me. Steadied by Jason, all I could do was sob. I was overjoyed, yet terrified too. At just five months old, was my baby really going to have a transplant?
The hours that followed were a whirlwind. Imogen was prepped for theatre, and Jason and I had to sign forms, consenting to the operation. I was sure we’d be told something had gone wrong – that the organ wasn’t viable – but soon I was kissing Imogen as an anaesthetist put her to sleep.
The right decision
Then all we could do was wait. Time seemed to drag, and a thousand thoughts filled my mind. Had we made a horrible mistake? Was Imogen too fragile, too young, to go through such an ordeal?
As the hours passed, Jason and I switched between sitting in silence or wandering aimlessly around the hospital. We barely spoke, except to call my parents, who were looking after Aliessa and Sonny, to tell them Imogen was in theatre. Then, at 2am the next morning, the surgeon appeared. He looked exhausted, but pleased. ‘It’s gone really well,’ he smiled. My shoulders sagged as I collapsed with relief. I felt so proud of Imogen. Against the odds, she’d made it.
It might sound hard to believe but, almost instantly it was as though Imogen was a different baby. The colour returned to her face and just 12 days later, she was breathing by herself. A month on, in June 2016, she was back home.
Walking through the front door after four months felt like the day I brought Imogen home after she was born. Alessia and Sonny rushed up to her, desperate for cuddles and kisses. And as I looked down at her sleeping, you’d never had guessed what she’d been through.
And it was only in the days that followed that it began to sink in just how incredible our daughter was. Her operation had been pioneering – leading the way for other children like her. Now, 14 months on, Imogen will be on anti-rejection medication for the rest of her life, but she continues to thrive. I often think about the donor, the little baby that passed away and the brave parents who allowed their lungs to be donated. I’ll never be able to thank them enough for what they did for us and I spend my spare time campaigning to raise awareness of organ donation.
When I watch Imogen dancing in front of the TV, it still feels like a miracle. Not a day passes when I don’t remind myself how lucky I truly am.
‘had imogen run out of time?’ ‘imogen has made the medical history books’