The most humbling New Year’s resolution of them all
Hayley’s unborn daughter is so ill she’ll die as soon as she is born – yet Mum has chosen to go through with the birth so Ava’s organs can save other babies’ lives . . .
HAYLEY Martin met with her midwife ten days ago to discuss the imminent birth of her daughter Ava. Like most expectant mothers, Hayley wanted to discuss her birth plan — her hopes and wishes for the safe arrival of her much longed-for little girl.
But the birthplan also contained the most heartbreaking addendum. For while 30-year-old Hayley and husband Scott discussed their options for the birth, in the same meeting they also had to talk about Ava’s ‘end of life’ care.
Tragically, their precious baby girl is suffering from a rare congenital disorder which will mean she will survive for only a matter of moments outside the womb.
‘As long as I get to hold her, that’s all I want for the birth because it’s all I’m going to have,’ says Hayley, a mother-of-three from Hull. ‘I’ve bought her a little sleepsuit with a hat and mittens, just like I did for my other three children. I didn’t want to put her in a gown because it looks too funereal. I want to make sure that when she’s in my arms, she looks warm, cosy and loved.’
Scott, a 30-year-old sales director, will be at his wife’s side.
‘I want to hold Ava while she’s alive, and if I get the chance then I’ll jump in for a kiss and a cuddle,’ he says. ‘But I think it’s only fair that Ava passes away in her mum’s arms, not mine.
‘Anyway, I’ve already decided I won’t be saying “Goodbye” to her, I’m going to say “See you later”. I feel we’re both making the same journey: it’s simply that I’m taking the slower route and walking, while she’s flying.’
It is the most unbearably bleak situation for any family to endure. But in their darkest moment, this remarkable couple are offering hope to others. Because when Ava passes away, they dearly hope that she will be able to donate her heart valve and tissues so that other children may live.
‘The pain we’re going through on a daily basis is the kind of pain I wouldn’t wish on my worst enemy, and if we can save someone else from going through it, then I can believe that this is happening to me for a reason,’ says Hayley.
‘I dread the day when I have to say goodbye to Ava. But if a tiny part of her can live on in someone else, then she won’t really be gone. I can’t bear to think of her as “gone”.
Scott puts his arm protectively round the shoulder of his wife as she dissolves into tears next to him on the sofa, stroking her stomach. Her eyes are redrimmed and she looks pale and tired, having only just come out of hospital after having collapsed with exhaustion and anaemia 48 hours previously.
The couple have known each other since they were 15 and were at school together, but lost touch. In 2009, they reconnected via Facebook and ten days later Scott travelled from his family home. They’ve been together ever since, marrying in 2014.
‘The first thing we said when we got together was that we wanted children,’ says Hayley. ‘My mum had four children and Scott’s parents had four children, so I always said I wanted four too.
‘We got pregnant with Kiowa easily, followed by Layla two years later. Oliver came along nearly three years ago — but when we started trying for a fourth baby, nothing happened for two years.
‘Then, earlier this year, I went to Somerset to do some training for our First Aiders company and I realised my period was late. I did a test which was positive and I was so happy.
‘I knew straight away that it was a girl because I had such bad sickness while pregnant with my other daughters. This time, even a sip of water was making me ill.’
The severity of the morning sickness meant that at around six weeks Hayley had an early scan to determine whether the pregnancy was ectopic. All seemed normal.
Yet Hayley instinctively felt something could be wrong.
‘I said to my midwife: “I don’t feel pregnant” — but she said it was early and not to panic. With my other pregnancies, I’d been showing very early on but with this one I hardly had a bump. I could even lie down on my front. It felt odd.’
Refusing to be alarmed, Scott and Hayley were excited when they went for a routine 20-week scan.
WE were so excited because we were going to find out if we were having a girl or a boy,’ says Hayley. ‘Scott was joking that he couldn’t cope with a third girl and we were laughing.
‘The sonographer started scanning me and straight away I could sense something was wrong.
‘She turned the screen towards me, and it looked wrong. There was no blackness around the baby, and I started crying.
‘She brought in another doctor and I heard her say: “I thought I saw a kidney but it may have been another gland” but that was it. They kept saying, “It’s nothing you’ve done” — but I wanted to scream: “What? What is it that I haven’t done?”
Scott continues: ‘When they stopped scanning and told us they were going to take us to a quiet room, I knew then it was bad.’
In the quiet room, the midwife told them that they suspected their baby might have renal agenesis — a condition in which one, or both kidneys, is not present.
‘She didn’t explain what it meant at the time but kept saying, “I’m so sorry this is happening”,’ says Hayley. ‘I was in floods of tears. I knew that renal had something to do with the kidneys but that was it.’
An appointment was made with a specialist the next morning, and the couple left hospital to pick up their children from school.
‘Kiowa ran out, she was shouting: “Are we going to have a brother or sister?” says Scott. ‘I just said quietly: “Will you do me a favour and go and hug your mum?”
‘When Hayley got out of the car, Kiowa saw her face and said:
“The baby’s not coming home, is it?” She’s so sensitive and astute.
‘We went home and Hayley went straight to her room, shut the curtains and lay down on the bed.’
Scott threw himself into Dad mode, making the tea and looking after the children. ‘I thought: “I can’t cry, I can’t be upset” — I needed to be there for Hayley and the kids. Sometimes this gives the wrong impression — that I don’t care about what’s happening, which of course I do.’
Meanwhile, Hayley started Googling. She discovered that the baby had a good chance with one kidney, but bilateral agenesis — when both were missing — was always fatal. If the baby doesn’t pass away in the womb, it would not survive labour or will live only for a few moments outside the womb.’
After a sleepless night, Scott and Hayley returned to the hospital where bilateral renal agenesis was confirmed. There was nothing that could be done to save their baby.
The couple were offered several heartbreaking options. They could terminate the pregnancy straight away or continue and give birth, which would, understandably, be distressing.
‘I couldn’t live with the knowledge that I’d killed my baby, but I kept asking whether, if my baby lived, would it suffer any pain? I was reassured that it wouldn’t suffer at all.’
Back home, it was left to Scott to make the painful calls to inform friends and family, while Hayley retreated upstairs to her bedroom. When she emerged a few hours later, a decision had been made.
Hayley recalls: ‘My feelings were that the longer I could hold onto the baby, then the longer we’d be together. I wasn’t ready to say goodbye.’
Then she had an incredibly brave idea. What if they donated their baby’s organs? That way, someone else would live, even if their baby didn’t. That way, their baby wouldn’t be gone completely.
Remarkably, Scott says he’d been having the same thought.
‘If we can save anyone the pain that Hayley and I are feeling right now, then we will. If Hayley had gone ahead with the termination, there would always be a “What if?” What if we’d had a minute with the baby? What about ten minutes? What if the baby had opened her eyes? You’d spend your entire life wondering. I think Hayley is amazing for even considering carrying on.’
With the medical professionals backing their decision, it was now a matter of waiting. As the 20-week scan had been unable to determine the sex of the baby, a charity called Charlie’s Angels paid for a private 4D scan and blood test which finally proved Hayley suspicions: she was having a little girl.
‘I thought, “Finally, I can call her Ava”,’ says Hayley. ‘It means that when I do meet her — and say goodbye to her — I can call her by her name. I can personalise things like clothes and blankets.
‘It’s really helped me bond with her. Every night I have a bath with her and Ava seems to love it. She wriggles around and I talk and sing lullabies to her. I even read books to her. It’s just my time alone with her. All the stuff you do with your baby, I’m doing now because I won’t get that chance.’
HAYLEY has been told that she will have a caesarian section in the second week of January, when she is 38 weeks pregnant. ‘I wanted to give birth naturally but there’s more chance of Ava being stillborn. I’ll do whatever it takes to be able to spend some time with her,’ says Hayley.
‘We could have a minute with her alive, or it may be an hour. There’s one recorded birth where the baby survived for 24 hours. The doctors have said that if she’s in any distress at all they’ll give her morphine and she won’t feel a thing.’ Kiowa, seven, Layla, five, and Oliver, two, will meet their sister shortly after the birth, as will Scott’s two sisters. The family have been told they can spend as much time as they want with her — although if they wish to donate the heart valves and tissue, the operation needs to take place within 48 hours of her death.
‘I’ve told the children that Ava is very poorly and won’t be coming home but she will be going to Heaven where my granddad will look after her,’ says Hayley.
‘If we want to speak to her, we can send a balloon with a message and cuddle a little bear which contains a recording of her heartbeat. Oliver is too young to know what’s going on but Kiowa understands. Layla said the other day: “Don’t worry, Mummy, we can get the bus to Heaven and see her at the weekend.”
‘We hope that she can donate her heart valves and tissue, which can be stored for up to ten years. But she needs to weigh 5lb 5oz or more at birth so if she can’t, she can’t. It’s not the sole purpose of having Ava. It would be a nice thing to do, but it will have raised awareness about organ donation regardless.’
Meanwhile, the family have the unimaginably painful task of planning a funeral for their little girl before she is even born.
‘I want people to wear pink or blue but also green because it’s the colour associated medically with problems with the kidneys,’ says Hayley.
‘I’d like people to release balloons with messages on them for either Ava or for another baby they’ve lost. I’d like them to be able to write a note of comfort to others who have lost a baby.’
The couple are also setting up a charity in Ava’s name. ‘There isn’t any specialised care for parents whose baby is alive in the womb but who know it’s going to die,’ says Hayley. ‘Because you haven’t lost the baby yet, the bereavement counsellors won’t do anything.
‘I want to be able to help such women have scans to find out the sex of their unborn babies, where they’re not sitting with happy pregnant women in the same waiting room.’
But for now, the couple must get through the next few days, spending precious moments with their unborn child.
‘With a normal pregnancy, you are longing for the day you meet your baby, but I want to delay it as much as possible,’ says Hayley. ‘With every second that passes, I know I will have to say goodbye to Ava and that I’m not going to be able to hold her ever again. The only thing keeping me going is the fact that she’s here, that she’s inside me. The minute she’s gone my world will fall apart.’