Gently cradling her newborn daughter, Hayley Martin memories every detail of her tiny face.
Little Ava-Joy, warm in a pink knitted hat, is just a few minutes old and is peacefully dozing, her breathing coming in small snuffles.
In normal circumstances, it would be a picture of pure joy. But if Hayley looks more drawn and tired than most new mothers, it is entirely understandable.
For this poignant photograph marks the final act in what has been a drama of draining intensity – and huge personal courage.
Ava battled against all the odds to survive for 96 minutes after her birth, longer than any dared hope. She cried, she wriggled, she gripped her mother’s finger. Pictured: Tiny Ava is cradled by brave mother Hayley at Hull and East Yorkshire Women and Children's Hospital
Hayley and her husband Scott attracted the admiration of the nation when, a few weeks ago, they revealed the decision to carry their daughter to full term, despite knowing she was suffering from a devastating genetic condition and would survive for only a few precious moments.
Their hope was that they could donate Ava’s heart tissue to another desperately ill child, so that in some form Ava would live on despite her diagnosis.
The couple’s courage and self-sacrifice led to an outpouring of support from friends, family and strangers from around the world who sent heartfelt messages expressing respect for their decision.
But today they reveal that even this one small wish was taken from them. For when Ava was born on January 8, she was too small – just marginally underweight – for her organs to be retrieved.
When Ava was born on January 8, she was too small – just marginally underweight – for her organs to be retrieved
And yet, as the family reflect on what has been an awful experience, there have been moments of wonder.
Ava battled against all the odds to survive for 96 minutes after her birth, longer than any dared hope. She cried, she wriggled, she gripped her mother’s finger.
These are precious memories that her parents will treasure for ever and which they want the world to celebrate.
‘When we found out she was just 55g underweight – the same weight as a packet of crisps – we were devastated,’ says Hayley, of the news that little Ava could not be a donor.
‘It wasn’t the only reason we carried on with the pregnancy but it would have been so great for her to have been able to help another child. I plan to donate a kidney in her honour.’
The couple and their three older children are now preparing to say their last goodbyes, living in a hospice next door to where Ava’s little body lies in a specially cooled room.
‘Some people, including the professionals, have said we had 20 or so weeks to prepare for this,’ Hayley says.
‘But nothing prepares you for your own child dying. Every day you expect to wake up from your worst nightmare and you don’t.
‘But those 96 minutes that she was alive were the best of our lives. I would do it all again.
‘I wouldn’t give up those 96 minutes for anything in this world. Ava has touched more lives in those minutes than I would in 96 years.’
Scott and Hayley, both 30 and from Hull, had been blissfully happy until a 20-week scan in September.
The scan revealed that Ava had bilateral renal agenesis – a fatal condition in which neither of the kidneys develops.
‘Everything fell to bits in that moment,’ Hayley says.
‘I went from a happy, expectant mum looking forward to having my fourth baby to having it snatched away in the blink of an eye.’ It is a cruel irony that the couple are both paediatric first aid specialists.
‘How can we teach someone to save their child’s life when we couldn’t save ours?’ Scott says.
They were offered a termination and told that the average survival time for babies with the condition was just nine minutes after birth.
But the couple, who met at school before marrying in 2010, decided they would rather continue with the pregnancy.
Partly, they were buoyed by the fact that Ava’s organs could save another child’s life; but, heartbreakingly, they were also keen to give their daughter as much life as she could muster.
‘I didn’t want the pregnancy to end and I wasn’t ready to say goodbye,’ Hayley says.
‘I’m not somebody who would say, “This pregnancy is not viable” and terminate.
‘It was always about giving Ava as long as she was supposed to live for.’
The remaining months passed in a blur. Then, at a scan on January 2, they received the devastating news that Ava was unlikely to grow to the required 5.5lb weight for organ donation.
Doctors also advised them to have a Caesarean section as soon as possible because of the increased chance of stillbirth from the baby’s illness. It was booked for January 8, when Hayley would be just over 37 weeks pregnant.
‘At one point I would have given anything for it to be over,’ Scott admits. ‘When we were given the date for the Caesarean I would have given anything to have kept the pregnancy going.’
Hayley adds: ‘They said even if we wanted to carry on she wouldn’t make the right weight. I felt numb.
‘You know when your baby will be born, but at the same time you also know the day your baby will die.’
The night before the Caesarean, Hayley barely slept. ‘I lay there and told Ava I loved her; that I wished she could stay. I asked if there was a God, would he please save her so that I could keep her.
‘I thought about not turning up to the hospital at all. I wanted to run away.’
Instead, she faced the toughest day of her life.
Ava was born at Hull and East Yorkshire Women’s and Children’s Hospital at 10.01am.
‘When they pulled Ava out they said, “Here comes a cute little bottom”. I said, “That’s mine!” ’ Scott recalls, laughing. ‘I saw her – she had lots of hair – and then we heard her cry.’
‘I didn’t ever think we’d get that,’ Hayley adds, quietly.
‘It was the most beautiful thing. The fact she did [make a sound] is something that can never be taken away from us.
'She didn’t open her eyes because the vernix, the white substance on newborn babies’ skin, had stuck them together.
‘But she gripped my finger. She was a fighter.’
The couple were warned Ava wouldn’t breathe normally because her lungs were underdeveloped but her moments on earth were, Scott says, ‘sweet and peaceful’
Scott has precious video footage of Ava moving on the scales. Her cries settled as she was laid on Hayley’s chest and, apart from a slight clubfoot, she looked like any other newborn.
The memory, now, is bittersweet. ‘She looked so peaceful,’ Hayley says, tears rolling down her face.
‘I know I’m her mum but she was perfect, beautiful.’
The couple were warned Ava wouldn’t breathe normally because her lungs were underdeveloped but her moments on earth were, Scott says, ‘sweet and peaceful’.
‘I remember looking at the clock and thinking she’d survived for 30 minutes,’ he said. ‘Then I stopped watching.’
At about 11.15am, a midwife checked Ava’s heartbeat and told Scott and Hayley it was slowing down. ‘About ten minutes later a nurse put her stethoscope on Ava’s chest and then looked at the clock,’ Scott says. ‘We knew then.’
‘All I can remember is hearing people sobbing and this person wailing. Then I realised that person was me,’ Hayley says. ‘It was surreal,’ Scott adds. ‘But really, Ava had a long life. Ninety-six minutes? She smashed it.’
Ava was photographed in several little outfits, including a Newcastle United one in tribute to Scott’s father, a supporter of the club.
But Scott and Hayley felt their grief was inadvertently compounded by issues at the hospital.
For example, the dedicated bereavement suite they had been promised at the hospital was occupied, which meant they were initially put in a ‘back-up’ room, a normal delivery room within earshot of healthy babies being born.
‘You could hear the gas and air, the women screaming, the midwives saying, “One last push” and the babies crying,’ Scott recalls. ‘It was so insensitive.’
Promises to book a charity to take photographs of Ava, and take a lock of her hair, also weren’t fulfilled, and – heartbreakingly – a health visitor delivered Ava’s child health record book, which charts infants’ development, to the couple’s home, seemingly unaware that she had passed away.
‘No one talks to each other,’ Hayley says of the medical support.
‘Every time you speak to doctors, midwives or any health professional, you have to explain again what has happened.
‘If someone has lost a baby before they have a “rainbow baby” sticker on their notes.
‘There’s nothing for those who are going through it for the first time.’ It is something Hayley plans to campaign to change.
It is all the more troubling, they say, that Hull and East Yorkshire Hospitals NHS Trust was last year one of 11 chosen to trial a new care pathway for bereaved parents.
Hayley says: ‘Death is part of life and every life is equal. I don’t want these lost babies to be treated like a dirty little secret.
‘I want to make Jeremy Hunt aware just how poor the bereavement care in maternity units is. I want to fight to ensure bereaved parents are treated with the respect they deserve.
‘People have said, “You’ve got three beautiful children to concentrate on”. But Ava is my child as well. There will be no pretending she didn’t exist.’
A spokesman for the trust said all midwives had been given bereavement training.
Lead midwife Lorraine Cooper said they were not able to comment on individual cases, but urged Hayley and Scott to get in touch to discuss their concerns in detail. She extended the trust’s ‘deepest sympathies’ for their terrible loss.
There is little which could ease the Martins’ pain, however.
A pink memory box contains all of Ava’s little outfits alongside a butterfly necklace in a butterfly-shaped box, a gift from her grandmother.
There are cards and pictures from Ava’s siblings. A poem Hayley has written, which will be read at Ava’s funeral on February 8, is taped inside the lid.
The Martins plan to set up a charity, Ava’s Butterfly Baby Pathway, to help parents savour every moment with terminally ill babies and come to terms with their loss.
‘You’re not just robbed of their life, but of their future,’ Hayley says. ‘I will never hear my daughter call me Mummy, I’ll never see her first smile and that hurts.
‘But I take comfort from every moment I had with her. Those moments will make me smile and I feel lucky to have them.
‘I’d rather think of Ava as a butterfly than an angel. Butterflies have transformed into something beautiful and fly away.
‘The outpouring of support we have received from friends, family and total strangers has been overwhelming and comforting.
‘Losing our precious daughter has been absolute hell but we wouldn’t change anything we did.
‘We’d do it all again.’