Parents whose baby daughter died after just 25 days have spoken of the “vital” support they receive from East Anglia’s Children’s Hospices (EACH). Fiona and Luke Gibbons suffered the “most devastating experience possible” but say the charity is helping them put their lives back together.
Little Ava weighed just 1lb 13oz when born prematurely after 24 weeks and five days, in January 2022. She put up a fight and surprised doctors with her strength, despite having under-developed lungs and being on a ventilator the whole time.
However, she lost her brave battle and died within a month. Fiona and Luke were referred to EACH and Fiona has been having regular, invaluable sessions with counsellor Andy Jaggard at The Nook, in Framingham Earl. Luke has also accessed some groups and attended events with his wife.
“Ava was our first child and meant the absolute world to us,” said Fiona, a Postgraduate Research Officer at the University of East Anglia.
“She was born prematurely, which was incredibly frightening for us. I went to the hospital after some discomfort and she was born within an hour and a half. From the start, Ava was feisty and a real fighter. She came out moving her arms and legs and even gave a little squeal, which is apparently unusual for such a premature baby.
“She was 1lb 13oz, which we were told was a good weight for her gestation, and fought for the entirety of her 25 days. She was a wriggler through and through, always moving around – even when the doctors and nurses had given something to sedate her.
“They were constantly amazed by her strength and she won over the nurses with her cheekiness. She had the most beautiful eyes and a surprisingly thick head of soft strawberry blonde hair.
“I got to hold her for the first time on day 13 and they were the most special three hours of my life. The next time we got to hold her were in the hours before she died. Luke and I both got to have skin-to-skin with her and, while totally heart-breaking, it was also incredibly special.”
Ava spent her entire life in the neonatal intensive care unit (NICU) at the Norfolk and Norwich University Hospital.
“For us, the hardest thing about that was all the beeps and alarms,” said Luke, 42.
“We never knew what they meant and you didn’t know whether to be worried or not. Having to leave her behind each day was heart-wrenching, but we knew we had to try and look after ourselves, too.
“We were thinking in the long-term, hoping Ava would eventually come home with us. Had we known we would have such a short time with her, we would have spent every minute we could with her.”
When the end came, everything happened quickly and the couple stayed at the hospital to say their goodbyes.
“Before we knew it, we were being told Ava would not survive and everything happened within 17 hours,” said Fiona, 39.
“This has been the most devastating experience possible. Ava was so loved and such a wanted child. Having tried to conceive for so long, after a long road of infertility and IVF treatment, we were so excited to plan this next step in our lives. We feel lost without her and our lives feel like they have stopped.
“It’s been so hard for our families, too, having already experienced a very difficult period of time. I lost my younger brother to cancer in November 2020. Learning how to navigate loss and the change in direction has been really hard for us.”
Fiona and Luke were referred to EACH by the family care team at the hospital and put in touch with Andy.
“Andy was brilliant from the off,” said Fiona.
“He was in touch within a week and helped us make more memories with Ava (casts, ceramics and canvases), as well as just listening as we tried to figure out what to do for the funeral.
“I’ve been having regular counselling with him ever since and we’ve also joined EACH’s Bereavement Support Group. Andy has been vital in helping me navigate how to be a parent to a child who is no longer here, as well as helping put my life back together.
“EACH has been fantastic in its support and we’ve been able to participate in a number of events since losing Ava. Everyone we have come into contact with is understanding and takes the time to listen and hear our story.”
Fiona and Luke, who live in Bowthorpe, have since thrown themselves into fundraising, supporting both the NICU and EACH.
“We want to ensure that Ava’s life continues to makes a difference,” said Luke, who also works at the University as Head of Undergraduate Admissions.
“We raised nearly £2,400 for the NICU in the early days and it’s going to help them to improve the facilities in one of the bedrooms for families who have to go through what we did. Fiona also did the Norwich Bubble Rush in July with ‘Ava’s Army’ and they raised over £500 for EACH.
“Although times are tough for people financially, we hope to be able to continue fundraising in some form in the future.”