Hayley Martin knew her baby wouldn’t survive past birth, but she carried her to term anyway.
As Dearly previously reported, Hayley and her husband, Scott, learned at the 20-week scan their baby suffered from bilateral renal agenesis, a rare genetic disorder in which the kidneys don’t fully develop. In addition, the baby would lack a bladder and develop a physical deformity known as Potter’s Syndrome.
Hayley refused the doctor’s offer to terminate her pregnancy. Hayley said in an interview with the Daily Mail:
“I didn’t want the pregnancy to end and I wasn’t ready to say goodbye. I’m not somebody who would say, ‘This pregnancy is not viable’ and terminate.”
The mother from Hull, England, insisted she carry her baby, whom she named Ava-Joy, to term in order to donate her organs, in particular her heart valves. In an interview with ITV’s “This Morning,” Hayley said:
“Anything is better than nothing. I know she can’t donate proper organs but tissue is just as valuable.”
However, on January 2, Hayley and Scott were notified that despite the couple’s best intentions, Ava-Joy would likely not grow to meet the 5.5 lb. weight requirement to donate her organs, reports the Daily Mail.
Hayley called the news “devastating”:
“When we found out she was just 55g underweight — the same weight as a packet of crisps — we were devastated.”
Doctors told Hayley even if she continued the pregnancy, Ava wouldn’t make weight. At 37 weeks, doctors advised Hayley to undergo a C-section to reduce the risk of stillbirth caused by her condition.
Scott described his heartache to the Daily Mail:
“At one point I would have given anything for it to be over. When we were given the date for the Caesarean I would have given anything to have kept the pregnancy going.”
On January 8, at 10:01 a.m., Hayley gave birth to a “perfect” baby girl. The four-time parents were delighted by the newborn’s cries. Scott said:
“When they pulled Ava out they said, ‘Here comes a cute little bottom.’ I said, ‘That’s mine!’ I saw her — she had lots of hair — and then we heard her cry.”
“I didn’t ever think we’d get that. 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.”
At 11:15 a.m., Ava-Joy’s parents were notified their little girl’s heart was slowing down. Shortly before 11:30 a.m. she passed away. Scott recalled the moment he and his wife knew their baby was gone:
“About ten minutes later a nurse put her stethoscope on Ava’s chest and then looked at the clock. We knew then.”
Haley remembered the sound of her own grief:
“All I can remember is hearing people sobbing and this person wailing. Then I realized that person was me.”
Although the couple initially had been told babies with Ava’s condition don’t live longer than nine minutes, baby Ava stayed with her parents for 96 minutes. As Scott said:
“It was surreal. But really, Ava had a long life. Ninety-six minutes? She smashed it.”
A funeral for Ava-Joy Sarah Rosie Nicola Martin is scheduled for February 8. For now, she is in a specially cooled room in hospice where her parents live next door, reports the Daily Mail.
A Just Giving page has been set up to help the Martins with funeral expenses and to establish a charity in Ava-Joy’s memory. Ava’s Butterfly Baby Pathway is aimed at supporting families who decide to carry a baby to term despite a terminal diagnosis. Hayley also revealed her plans to donate a kidney in baby Ava’s memory.
She told the Daily Mail:
“[Organ donation] 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.”
In the weeks since their baby’s passing, the Martins said nothing could have prepared them for the loss:
“Some people, including the professionals, have said we had 20 or so weeks to prepare for this. But nothing prepares you for your own child dying. Every day you expect to wake up from your worst nightmare and you don’t.
However, they wouldn’t trade the time they did have with baby Ava for anything:
“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.”
Hayley added: “Ava has touched more lives in those minutes than I would in 96 years.”