Rachel and Tomas Deane only had 13 months with their precious daughter Kiera. They talk to SARAH FOSTER about what they’re doing to raise money in her memory.
Photos of Kiera Deane line the walls of her parents’ home and sit in frames on every shelf.
During her short life Rachel and Tomas Deane took more than 18,000 images of their baby girl – they’ve done the maths and worked out that’s about one picture every half an hour.
They aren’t the only new parents to have sat there capturing all their baby’s important moments. But for the Deanes, taking photos had an added significance.
As they sit in their lounge surrounded by pictures they’ve not yet had time to put up in frames, they explain how they wanted to make sure they would have as many memories of Kiera as possible. They knew they wouldn’t always have her but they were determined to fill the time they did have with smiles, cuddles, kisses and love.
The pain of losing the daughter they called their Little Miss Sunshine is still raw but, with tears in her eyes, Rachel says they believe they were lucky to have had her at all.
‘At least we had her in our lives,’ she explains. ‘We got to have 13 months of Kiera. I’m so blessed to have had her in my life.’
Kiera died on Sunday, January 30, after suffering a series of massive epileptic seizures that left her brain damaged beyond repair. With an already complicated medical history, the epilepsy was just too much for her little body to beat.
Kiera was diagnosed with the rare Lissencephaly Miller-Dieker syndrome when she was just three months old. Lissencephaly means smooth brain and Rachel was horrified when her own internet research told her children born with the genetic disorder couldn’t be expected to live longer than just a few months.
The couple, from Crookhorn, had already had a tough time. Rachel, 23, and Tomas, 24, had been ecstatic when they found out they were expecting their first child. But Rachel developed gestational diabetes and polyhydramnios – or too much amniotic fluid in the womb – and had to have scans every week until her due date.
‘I was very worried and upset,’ remembers Rachel. ‘They told me my child might have problems with eating and swallowing. I worried more and more about what was going to happen. I thought “Is this baby going to survive?” But we were still hoping that she was going to be OK.
‘We knew we were going to have a girl at the 20-week scan and we called her Kiera.’
Their daughter was born on December 21, 2009, weighing five pounds nine ounces. On Christmas Eve they were allowed to take her home – but their happiness was short-lived.
‘She was so floppy and very sleepy,’ says Tomas. ‘She was also very jaundiced. We were having to spoon feed her because she wasn’t sucking. She was very dehydrated and on Boxing Day we had to go back to hospital.’
Rachel adds: ‘I remember calling my mum and saying we wouldn’t be long. It was near enough four months – we only came home in April.’
Rachel and Tomas took it in turns to stay overnight with Kiera, who caught pneumonia five times as well as bronchiolitis and had gastro reflux disease. Queen Alexandra Hospital, in Cosham, became their home as they willed their daughter to get better.
But the bad news wasn’t over and when genetic tests revealed Kiera had Miller-Dieker the couple realised they had to make the most of every day they would have with her. They planned her christening and got all their guests to wear bright colours for the day. On April 14, 2010, Kiera was finally allowed home.
‘We knew that she wouldn’t live very long so we wanted to make as many memories as possible,’ says Rachel. ‘We tried to do as much as we could, to have a normal family life.
‘We wanted to cram so much in and not just for her but quite a lot for us really. We wanted to have some memories of her. I was on a mission and we did lots of things and had a lot of fun.
‘But at night I would cry and cry knowing that one day I wouldn’t have her here, that I would miss doing her medication in the mornings and the sleepless nights.’
Rachel and Tomas remember happy days out at the beach and Blue Reef Aquarium. They took Kiera to the Spinnaker Tower and Marwell Wildlife Park and the pictures they have from those occasions are precious, especially now she’s gone.
Despite the doctor’s earliest predictions, Kiera did learn how to smile and communicate vocally with ‘oohhs and ahhs’. But her development was always going to be different from other children.
‘A lot of my friends had babies at the same time and I used to write updates on Kiera’s progress on Facebook,’ says Rachel. ‘Other people were saying all the things that a new baby would do, like crawling and saying their first words, but we knew we’d never get that and it was so sad. But she was happy and she had a nice life.’
Both Rachel and Tomas had tests to see if the gene deletion which had caused Kiera’s problems was present in them. But they were told it wasn’t and, although that means there’s no reason why they can’t have a child without Miller-Dieker, it still left them with questions.
‘The doctors said “It’s just bad luck, it happens sometimes”,’ says Rachel. ‘But I remember thinking “That’s not good enough, I want a reason. I wanted to know what had happened to make this happen.’
They were warned Kiera would develop epilepsy and that was diagnosed in October. After nearly six months of watching their daughter smile back at them when they tickled and cuddled her, they quickly saw her deteriorate. Every time her medication was increased to cope with the seizures they could see Kiera slipping away.
Against all the odds, Kiera managed to beat swine flu but on January 26 she had a massive epileptic seizure.
‘When she first got diagnosed with epilepsy we were able to keep it under control,’ explains Tomas. ‘She started off on one type of medication and it ended up as four types two times a day. She became more and more floppy and went back to being like a newborn baby. She forgot how to smile. She looked like she was confused about who we were and that was heart-breaking.’
Two days before Kiera passed away the couple took the decision not to put her on a ventilator machine.
‘We decided we couldn’t put Kiera through any more pain and didn’t want her to suffer any more,’ says Rachel. ‘She was only 13 months old and had been through so much in her short life.’
The family were taken to Chestnut Tree House, a children’s hospice near Arundel. The last hours they spent with her are precious and that was down to the care they received at Chestnut Tree House. Kiera passed away at 1.25pm with her mum and dad by her side.
At her funeral they released yellow balloons in memory of their Little Miss Sunshine and they smile as they go through some of the pictures they took of their time together. At the moment their energy is focused on raising money for Chestnut Tree House (see below) but they say Kiera changed their lives forever.
‘When we were looking after Kiera we relied on each other,’ says Tomas. ‘I think, in a way, when you first get together you plod along. We didn’t have a reason to get up but Kiera came along and we had a reason. We had to work together and that’s carried on since she’s gone.
‘We were very happy to have had, she will never be forgotten. She touched so many lives.’
On Friday, Rachel and Tomas Deane will join more than 30 friends on a two-mile walk to raise money for the children’s hospice where their daughter Kiera died.
Tomas says Chestnut Tree House was their ‘lifeline’ during Kiera’s last days. At the most unbearable moment of their lives the staff helped ease their pain by giving them a peaceful place to stay.
But despite their grief they are determined that the walk should be a positive occasion, full of laughter and happy memories.
Many of the walkers will be wearing pants on their head as a fun way to remember little Kiera.
During one of their many hospital stays they found themselves in the parents room at QA. With no windows, TV reception or phone signal, Tomas says it was ‘cabin fever’ that first made them put Kiera’s pants on her head. It lightened the mood and soon became an in-joke for the family and nursing staff.
Rachel and Tomas have also had yellow T-shirts made because their nickname for Kiera was Little Miss Sunshine.
‘Everything was yellow for Kiera,’ explains Rachel. ‘When I was pregnant I hated pink so everything was yellow and she loved it. She was like a little ray of sunshine, she was the sunshine girl.’
Tomas adds: ‘We’re excited about the walk, we’re looking forward to it. We want it to be uplifting and fun, we’ll be remembering the good times.’
The walkers will leave South Downs College, Waterlooville, at midday.