Hayley and her husband Scott drew national attention when, a few weeks ago, they revealed their decision to carry their daughter full term, despite knowing she was suffering from a devastating genetic condition and would only live for a few precious moments. When Hayley Martin and her husband Scott learned their child wouldn’t have a kidney when born, they were five months along in the pregnancy.
Scott and Hayley, both 30 years old and from Hull, were very happy until a 20-week ultrasound in September. The scan revealed that Ava had bilateral renal failure – a serious condition where both kidneys are damaged. not develop. Everything fell apart in that moment,” Hayley said.
In the blink of an eye, I went from being a joyful mother anticipating a fourth child to having it stolen. Ironically, the spouses are both experts in pediatric first aid. When we can’t even save our own life, how can we possibly teach someone else how to do it?
Hayley was adamant on being a surrogate throughout the pregnancy, despite the physicians’ advice to terminate the pregnancy, in the hopes that her family may give her organs to other newborns in need.
Little Ava-Joy is only 55g, because she is too small to be eligible to donate organs. Hayley Martin recalls: ‘She had a small face, a warm pink hat and was sleeping peacefully after being born. In a normal birth, the image of a baby being born is a happiness of many families. Their hope is that they can donate Ava’s heart tissue to another critically ill child, so that Ava can live on in some form despite her diagnosis.
On January 2, the Hull couple learned the terrible news about Ava-size. Joy’s On January 8, they registered for a cesarean delivery. Hayley claimed she spent the majority of the night awake the night before the cesarean section. Added her: “While still in bed, I told Ava how much I loved her and how I wished she could stay. So that I might keep her, I prayed to God to save her.”
At Hull and East Yorkshire Women’s and Children’s Hospital, Ava-Joy was born at 10:01 a.m. She was shocked to hear her crying, and the family as well. Ava-Joy defied all odds by attempting to spend 96 minutes with her family before drifting off into eternal sleep, despite the fact that doctors had told Hayley and Scott that she would only survive for about 9 minutes after leaving the room, forever.
But today they revealed that even this small wish had been taken from them. Because when Ava was born on January 8, she was too small – only slightly underweight – to be able to take her organs. Ava a strong girl, she cried, she struggled, she clutched her mother’s finger. These are precious memories that her parents will cherish forever.
The couple and their three grown children are now preparing to say their final goodbyes, living in a hospice next door where Ava’s tiny body lies in a specially refrigerated room. Every day you look forward to waking up from your worst nightmare but it just keeps going. But the 96 minutes that she was alive was the best thing of our lives. I will do it all again. I wouldn’t give up those 96 minutes for anything in this world. Ava touched more lives in those minutes than I have in 96 years.
That night we went home and couldn’t say a word to each other. I felt like I was suffocating. The only thing we bought for Ava-Joy at the time was this white baby blanket. But anyway, we were very happy, happy to have a baby. Because of the little time she spent with us, with all her energy and efforts, she spent 96 precious blessings.
