This tender kiss from a mother to her child is invested with a weight of unendurable sadness. It is a parent’s last embrace; the moment when Jennifer Lawson said a final goodbye to the cherished daughter she believed was dying.
Doctors had told Jennifer there was no hope for 14-month-old Alice, who had succumbed to a virulent form of meningitis just over a month before. The disease had triggered kidney failure, then a catastrophic stroke. Alice lay in a coma in her hospital bed, dependent on dialysis and hooked to a ventilator.
The fragile threads that held her to life would soon be severed. Her life-support machine was about to be turned off, and a transplant team stood by. Jennifer had decided that from her daughter’s premature death some good should come. Her organs would be donated to help another child live.
And so she prepared for the unimaginable: the final farewell to her little girl.
As she cradled her daughter’s head in her hand, leant forward and pressed her lips to Alice’s forehead, all her teeming, agonised feelings were distilled into one thought: ‘How can I ever carry on without her?’
Today, she grapples for words to describe her pain. ‘I just tried to tell her how much we loved her; I hoped she could hear and understand. I talked to her as if nothing was wrong, but I felt delirious. It was so unreal. I felt the warmth of her; saw the pink in her cheeks. She just looked like a sleeping baby.
‘The past and the future merged in that moment. I told her how proud I was of her; that she had fought for so long and could rest now. And I lay next to her.
‘I was in a daze. They had told me she would die that morning; that they were turning the machine off because she would never breathe on her own. So I tried to tell myself she was already gone, that it was only her little body lying there. But it doesn’t work. You hold on to hope until there is none left.
‘The doctors had arrived for her organs. Suddenly they had unplugged everything and there was Alice, lying on her bed with the lights dimmed. They had given her morphine and then we were left alone, just me, Alice, and her dad, my partner Phil.
‘So I kissed my little girl. She felt so warm and cosy I couldn’t imagine she was about to die.’
Jennifer’s instinct was to prove right. What happened next was a miracle.
Alice did not die.
When her life support machine was turned off on March 24, 2010, she began to breathe on her own: her tenacious little spirit would not be vanquished.
Neither Jennifer, 31, nor Phil Lloyd, 36, could quite believe that their 14-month-old daughter had not slipped seamlessly from her coma into everlasting sleep.
‘The truth did not dawn on us to begin with,’ recalls Phil, ‘but then a nurse came in and said the strangest thing. She said the organ donation team were leaving; that they wouldn’t be needed after all. Then a doctor came in and told us Alice was breathing without ventilation. They’d been watching her monitors in a separate room; they’d seen her rally.’
As Jennifer recalls: ‘It was as if a bubble of despair had been popped. The sick feeling of being stifled just dissolved. Lovely Alice was with us again. We did not allow ourselves to feel joy — we did not yet know she was permanently out of danger — but the relief was indescribable. We felt we were witnessing a miracle.’
It is now two-and-a-half years since Alice lay on the brink of death. Today, aged three-and-a-half, she is a beautiful, doll-like child with china-blue eyes, rosy cheeks and an ever-ready dazzling smile.
She lives with Jennifer, a former massage therapist, Phil, who used to run an online fancy dress shop, and her elder sister Taylor, eight, in a neat semi in Gainsborough, Lincolnshire. The family’s puppy, a Westie called Alfie, bounds exuberantly around the sitting room.
Both Phil and Jennifer, who have been together for ten years, have now given up work to share the care of Alice. The legacy of septicaemia has left her with one leg shorter than the other; she cannot yet walk unaided but is formidably tenacious. The illness deprived her of speech, but she is learning to talk again. Her words are halting; she supplements them with sign language. When she sits on the floor, surrounded by her soft toys, her beam of pleasure lights the room.
Jennifer will never forget Valentine’s Day 2010, the day Alice fell ill.
‘Alice was a healthy, happy child, just starting to take her first steps,’ she recalls. ‘She’d never had more than a minor chest infection, so I wasn’t really worried when she became sick and off-colour.’
She phoned her GP who prescribed medicine to bring Alice’s temperature down, diagnosed a viral infection and sent her home. But then alarming symptoms developed. Jennifer noticed purple marks appearing on Alice’s stomach. ‘They were literally spreading before my eyes,’ she recalls. She rang the hospital. An ambulance arrived in minutes.
Alice was rushed to hospital in Scunthorpe. Doctors pumped her full of antibiotics. Tests disclosed that she was suffering from meningococcal meningitis and septicaemia. She was dispatched immediately to intensive care.
Jennifer remembers: ‘Everyone started shouting, and running around her with syringes and machines. We were taken to a family room, where Phil and I sat side by side in silence.
‘I just went numb. I couldn’t process it. Everything happened so fast. I felt I was outside my body, looking down on the scene. I don’t think I even thought about the word “meningitis” when they told us.’
Next day, Alice was transferred to the children’s hospital in Sheffield while Taylor went to stay with Jennifer’s sister. Jennifer recalls how she and Phil followed the ambulance in a taxi: ‘It was awful, being separated from Alice. I felt the loss of her closeness like a physical pain. She was with strangers, lying helpless in the ambulance. Phil and I couldn’t even speak.
‘When we arrived at the hospital in Sheffield I caught a glimpse of Alice in intensive care, with her pink blanket and her little pony toy. I shouted to the doctors, “Please don’t give up on her!” and burst into tears.
‘Her little face was swollen. You could hardly make out her features. We felt utter disbelief. But she needed us to be strong for her. We clung to the positives — she was safe, in the care of doctors who could help her.’
Thereafter, Jennifer and Phil kept a constant vigil at Alice’s bedside. First she was attached to a life-support machine. Then one of her kidneys failed. She was put on dialysis. Then she developed septicaemia. It caused a severe infection in her knee and back. She was put into an induced coma.
Jennifer struggled to remain calm. ‘I hardly left her side,’ she remembers. ‘I’d gently wash her face, put lip balm on her sore dry lips, hold her hand. Phil and I would sing the familiar songs she liked, act out scenes with her teddy bears, and we fastened balloons to her bed.’
‘I thought: “How much more can a tiny person take?'
Next, their gravely-ill daughter was transferred to the Queen’s Medical Centre in Nottingham. There, in the hospital’s renal unit, she seemed to rally. Doctors began to talk about a kidney transplant.
Alice’s parents allowed themselves a flicker of hope. But then her blood pressure rocketed, her eyes glazed over and her breathing became laboured. These symptoms were the harbingers of a stroke: Alice was rushed back into intensive care.
‘When we were told Alice had had a stroke, we didn’t quite believe it. It’s something you associate with elderly people,’ recalls Jennifer.
‘She had an MRI scan. Then they said she’d need a shunt fitted to drain the fluid from her brain. We heard snatches of the doctors’ conversations; phrases like “devastating bleed”. Phil became convinced she’d never pull through.
He recalls: ‘I thought: “How much more can a tiny person take?” ’ He clasps his head in his hands and bats back tears. ‘From that point, I started to prepare for the worst.’
Jennifer, however, clung on to hope: ‘I never said goodbye. You always hope and pray. I spent a lot of time in the chapel at the hospital, it’s the only thing you have left to do. When you’ve got nobody else, you ask for help there. I’d pray, “Please let her get through this.” ’
But then the thin thread of Jennifer’s optimism was stretched to breaking point. ‘A nurse burst into the waiting room and told us that Alice’s heart had stopped beating. Going down to the theatre in the lift was horrendous, but as soon as we got there, a doctor came out saying, “She’s back!”’
The yo-yoing of their emotions was almost unendurable. Then, when Alice went back to the ward it seemed as if hope had abandoned them. The little girl was in a deep, impenetrable coma.
‘She was not responding. I would feel a rush of excitement because she moved her arm, then nurses would tell me it was just a reflex muscle reaction. When the doctors did their rounds they walked past us. It seemed they’d given up.’
Jennifer and Phil prepared for the worst. They should gather the family, they were urged, and prepare to say their last goodbyes. There was nothing more the doctors could do.
They agreed she should be Christened. It was a short, perfunctory service and Jennifer recalls little of it. She only remembers clasping Phil and crying the whole way through. She also recalls worrying, needlessly, that she might have to sing.
‘Our parents came in to say their goodbyes,’ says Phil. ‘My dad said, “She’s not going yet”, but I remember thinking he’d accept it eventually, in his own time.’
Telling Taylor, then just six, that she would not see her sister again was heartbreaking. But even as they did so, they allowed for a little chink of hope.
‘We told her Alice might be going to Jesus, but we had to see if he wanted her,’ says Phil. ‘When you see a child’s face crumple in such a way, it stays with you for ever.’
Taylor had stayed with her aunt for the three-month duration of Alice’s hospital treatment. She had visited her sister often, ‘but I don’t think the implications of what we were telling her actually sunk in,’ says Phil.
He and Jennifer steeled themselves for their final goodbye to Alice on March 24. ‘We’d taken footprints of her hands and feet as mementos and I’d stayed up with her late the night before, virtually passing out with exhaustion in the early hours,’ says her mum. ‘Then, early in the morning, I’d gone to her bed in intensive care and taken some balloons with me. She loved balloons.
‘I fastened them to her bed then I kissed her. When I did, the world stood still for a moment. And then, of course, the miracle happened.’
When we look into her room at night and see her sleeping peacefully we pause for a minute and think how lucky we are
Alice pulled back from the brink. With relief came cautious elation. Then Jennifer and Phil had to adjust to the news that Alice would be disabled. With the new chapter came a fresh wave of strength. ‘Alice was just like a newborn baby again,’ recalls Jennifer. ‘She couldn’t control her head or sit up, but her kidney function was improving. That felt like a victory.
‘After a week, she was moved back to Scunthorpe; it felt like a step closer to taking her home. She had been fed by a tube, and when she took her first mouthful of pureed food it was another triumph. Then she started to reach for my hand. Half her face had been paralysed, but slowly, her smile came back.
‘We kept thinking how lucky we were and as she progressed, we focused on getting her stronger and preparing her for coming home.’
Duly, one May day two years ago, they brought Alice home. The joy they felt as they settled back into a new routine of family life was unsurpassed. Alice was infected by their excitement: ‘She started to make little squeals of happiness; they were her first sounds,’ her mum recalls.
Today, Alice attends a special school; recently, to Jennifer’s joy, she said ‘Mummy’ for the first time. There will be operations in future to lengthen her left leg, and both Phil and Jennifer intend to encourage her progress in every way. She’s still fed fluids through a tube in her stomach because she has not yet regained her capacity to swallow. Meanwhile, her kidney function has improved dramatically.
Each milestone is a cause for celebration. Alice is learning to count. She rides a specially-adapted bike; her paintings adorn the wall and her laughter fills the house. When Alfie lollops into the kitchen, Alice kisses the puppy tenderly on his nose.
It reminds Jennifer momentarily of that other kiss; the one she thought would be the last she would give her daughter.
‘When we look into her room at night and see her sleeping peacefully we pause for a minute and think how lucky we are,’ she smiles. ‘She really is our little miracle.’