A Midlothian mum and dad have paid tribute to their 'miracle' daughter who defied the odds after being born clinically dead to live 15 happy years and make plenty of memories.
Fiona and Keith Young, from Penicuik, were devastated when their baby daughter Ava was born and doctors informed them she was clinically dead. They were told they may only have an hour with their baby as family members to rushed to the hospital.
According to Fiona, the midwife hit the emergency button when Ava was born and scooped her up. After expecting to leave the hospital without their daughter, Fiona and Keith enjoyed more than a decade with Ava before she sadly passed away in August 2022.
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Ava defied all odds having been diagnosed with quadriplegic cerebral palsy, which is a life shortening condition. Fiona and Keith opened up on the highs and lows of their time with Ava with the Edinburgh Children's Hospital Charity and are backing their new charity appeal to help other bereaved families.
Fiona said: "When she was born, Ava was clinically dead. The midwife hit the emergency button, scooped her up and ran. We had to call our family and say, ‘We’ve had our baby, but if you want to see her, you’ll need to be here in the next hour'.
"I had imagined bringing her home to cards and balloons and feeling overjoyed. But instead, we sat with her in the hospital, hooked up to so many machines, knowing at any time she could pass away. Thankfully, Ava decided to prove everybody wrong and gave us 15 years."
As well as quadriplegic cerebral palsy, Ava was diagnosed with epilepsy and scoliosis curvature of the spine. She couldn’t walk or talk, but Fiona says she learned to express herself in her own way. The family became regular visitors to Edinburgh’s Sick Kids hospital.
Fiona continued: "Life changed. We used to say we had a season ticket. There were so many operations, so many 999 calls. Every time we visited there was another problem, another medicine, another diagnosis.
"We always knew we wouldn’t have her forever. From day one, every day was a bonus. But when we were referred to Palliative Care, it was terrifying. It made it real.
"Things started changing quickly. We had more hospital visits, and then Ava had a 15 hour seizure. We knew then that we didn’t have long left with her. I think she knew herself. She had been crying, which wasn’t like our smiley girl.
"Ava died at home, and we were there with her. Her passing was peaceful and beautiful, and she died with a smile on her face. We think she wanted to make it as easy as she could for us. It was very surreal and took us a long time to accept."
During this difficult time, Fiona and Keith were supported by Edinburgh Children’s Hospital Charity (ECHC) which funded memory making activities to help remember Ava. The family are now supporting the charity’s Never Forget appeal, which aims to help others cope with the death of a child.
Fiona said: "From our early days on the wards, there was always someone there from ECHC. Ava loved Christina the dancer and the musicians. She just lit up when they would visit! For a family like ours, who know they have limited time with their child, being able to have fun and just be together as a family means so much.
"Thanks to the charity, we were able to do lots of memory making before Ava’s passing. We were able to do our handprints as a cast and were given a lovely blanket that all the family have written on. Everyone we know has one of the lovely knitted elephants. They bring so much comfort.
"We were given a beautiful memory box, and we wear the forget me not pins from this daily. It’s a box that is sometimes closed, but we can open it back up whenever we want and bring back the memories, to remember our wonderful daughter, who will never be forgotten."
Pippa Johnston, Director at ECHC, said: “While most families continue to celebrate the ‘firsts’ – the first steps, the first words, the first tooth, donations to our appeal mean we could help more families like Ava’s to mark the ‘lasts’, with compassion, love and respect.
“Memory making supports the whole family, helping them to create precious keepsakes to treasure their child forever, in their hearts and in their home. For many, it is a vital part of their bereavement journey and we would like to thank anyone who takes the time to kindly make a donation.”
To donate to Edinburgh Children’s Hospital Charity’s Never Forget appeal, please visit: www.echcharity.org/donate
