Published: 18:45, 06 April 2020
| Updated: 18:59, 06 April 2020
Imogen and Duncan Tinkler, both 37, have asked people who cannot attend to film themselves blowing bubbles for baby Beatrix when they attend her service on Wednesday.
Her mum, who also has two-year-old daughter Xanthe, has described in upsetting detail how both parents had to turn her respirator off after scans revealed she had brain damage.
After a difficult pregnancy at QEQM Hospital in Margate, the little girl - known also as Bea - stayed at the Special Baby Care Unit for five weeks.
She was born on January 25 and weighed only 3lbs 4oz, so doctors and nurses helped her to grow.
Mum Imogen said: "She was nicknamed the 'Fiesty One' and [the staff] really did surround her with love and looked after her so well.
"Many of our friends visited her and even got to hold her. It was such a special time - one filled full of hope and excitement.
"Sometimes it was hard as we watched new friends we had made go home with their babies but we knew we just had to patient and that it would be our turn soon."
On February 25, Bea was allowed to go home. But the little girl could not go to places like the supermarket or pub as the risk of infection was too high.
Imogen added: "We did venture out once with Baby Bea on a walk to a Wild Garlic Patch which will always be such a special memory.
"We also visited her grandparents in Hythe for three days and those memories are locked firmly in our heart."
But she described the heartbreaking moment the family's lives were turned upside down.
"On March 16, I was getting excited about what to put my two little girls in for St Patrick's Day and listening to Duncan on the radio," she said.
While Imogen was breastfeeding Bea, she stopped holding her finger. Her arm was limp and her lips had turned blue.
She added: "I believed she was dead - I screamed and started performing CPR.
"Xanthe came running in on her remote control and was phoning Duncan, saying, 'come home Daddy, Baby Bea dead'.
"It broke my heart to hear her and not be able to comfort her as I stayed on the phone to the emergency services and continued CPR. It felt so pointless as I looked at my beautiful Baby Bea.
"Xanthe came back in again this time with her Peppa Pig stethoscope and said, 'no boom boom mummy'. Again, this broke my heart and still does as she wakes me and Duncan up at night to make sure we have a 'boom boom'."
Paramedics and police officers rushed to the home - and Bea was taken to hospital without her mum as she need to look after Xanthe.
"We were to follow behind in the police car to Margate," Imogen said.
"I kept thinking, 'this is pointless, she is gone - they are only taking us there to tell me my perfect little girl has died'.
But then the police officers told her she had been airlifted to King's College Hospital in London.
Xanthe was sat in the back of the police car clutching her football and Imogen was crying on the phone.
Duncan was told about the tragic news and officers rushed him to London.
When they arrived, Imogen thought they were going to tell her she had died. But medics had managed to start her heart.
She and her husband were led to the Thomas Cook intensive care ward at the Variety Children's Hospital.
But they could not visit their daughter until they had been masked and gloved due to the coronavirus.
"We had to visit her individually which felt so hard," Imogen added.
"Duncan and I just wanted to be together. However - 48 hours later - we got the results that she was clear and we could finally touch her and visit together."
An MRI scan revealed she had brain damage across the whole of the organ, which had impacted her breathing and her ability to function.
Imogen asked for a priest to baptise her and the couple took prints of her hands and feet.
She described the moment her and Duncan had to turn her respirator off.
"Duncan and I sat together and held her as she breathed on her own for a few moments before going to sleep," she said.
"I felt so lucky to get to share our last moments with her."
The couple have set up a page to raise money for the Special Baby Care Unit at QEQM Hospital and Variety Children's Hospital.
More by this authorBrad Harper