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Baby Matilda lived for only 90 days but, her parents captured every milestone in her short but special life

As Palliative Care Week begins Bangor mum Claire Gray talks about how she and husband Kris, aided by Hospice at Home nurses, made the tragically short life of their baby girl one filled with joy and unforgettable moments

By Stephanie Bell

Sweet Bangor baby Matilda Gray tragically only lived for 90 days but what a very special 90 days they were thanks to her devoted mum and dad Claire and Kris. The couple were told the shattering news that their little girl had only a very short time to live when she was five days old and despite their heartache they vowed to make every minute count.

The milestones they had dreamed of during pregnancy for their first born - her first steps, her first day at school and even her first college formal - would never now happen, so instead they made new ones.

Claire and Kris celebrated and recorded their baby's first bath, her first day outside of hospital, her first day home, her first visit to the beach and many more adventures which are now a tribute to their little girl.

They also celebrated her birthday milestones each week and each month, making the most of every minute.

In what they now fondly refer to as 'The Amazing 90 Days of Miss Matilda Gray', the couple have shared their heartwarming story to highlight the fantastic Hospice at Home service to mark Palliative Care Week, which runs from today until next Saturday.

Little Matilda needed round the clock care and nurses from the Hospice at Home service stayed several nights a week to allow both Claire and Kris to sleep, so that the family could spend their days together.

It made all the difference to the memories Claire and Kris were determined to build with Matilda. The nurses even created unique artwork using little footprints from Matilda which now adorn every room in the couple's Newtownards home.

Claire (34) works as a speech and language therapy assistant with children who have special needs and Kris (33) is a mortgage adviser. The couple now have a little boy, Archie, who is two.

When expecting their first baby in 2013 there was no sign that anything was amiss until at 34 weeks it was discovered that the baby was very small and not growing.

Matilda was induced at 37 weeks as a precaution and it wasn't until she was five days old that her parents were dealt the devastating blow that she had a life limiting condition known as Edwards' Syndrome.

Edwards' Syndrome, also known as trisomy 18, is a very rare condition caused by an abnormal amount of chromosomes in the cells of the body.

Sadly, most babies who are born with Edwards' Syndrome only survive a few days, weeks or months. Those who survive longer than a year have a wide range of complex medical problems.

Claire recalls how her longed-for pregnancy dramatically turned into an unthinkable nightmare in her last trimester.

"I'd had a healthy pregnancy and typical 20-week scan, but I was concerned about my lack of weight gain and small bump," she says. "At 34 weeks my fears were confirmed when doctors advised that our baby was very little and not growing. By 37 weeks we were informed that for her own good she had to come out.

"I knew a little bit about babies who are below their weight and the risks of being stillborn and I was terrified that I was not going to meet my baby alive.

"I had planned a natural water birth but instead I insisted on having a C-section because I wanted her lifted out with as little difficulty as possible and due to her size we had to have a neonatal cot on standby. They didn't have one available in the Ulster Hospital so we had to go by ambulance to Craigavon."

Matilda Margaret Ruth Gray was born at 12.50pm on Sunday, July 28, 2013, weighing just 4lb 6oz.

Paediatricians broke the news straight away that little Matilda appeared to have special needs and she was whisked away to intensive care.

The couple immediately started to think positively about their child's future and how they would support her needs - oblivious that the worst blow of all was still to come.

Claire says: "I think because of my job I was very accepting. Some little babies are born with special needs and I just thought 'why would that not be us?'. When she was born they kept calling more paediatricians over and they told us they had noticed a few little things - her ears were a little bit low and her nose was a bit wide and I asked if she had Down's Syndrome but they said she hadn't.

"I decided then and there we would celebrate all the things she could do and do everything to help her. I did get to give her a kiss but I didn't get to hold her, which was really upsetting. Before they took her away I noticed her wee toes were fused and turned out and I felt really sad for her that she might need an operation and be left with scars on her feet.

"Her wee life started to flash in front of me - what if she wanted a boyfriend when she was a teenager? What if we couldn't have any more children and she had no one to look after her when we died?

"While I was thinking all these things I was also relieved she was alive and even though she wouldn't get the life we had hoped for, at least we had her with us."

Claire's optimism was shattered when five days later, on August 1, she was told that her daughter had the life-limiting condition Edwards' Syndrome and was unlikely to live to see her first birthday.

In that moment once again all of her hopes and dreams were crushed.

Claire says: "We just thought how could this be possible? She was five days old and becoming stronger each day. We thought she was safe. We thought we would be together forever. It was like being hit by a freight train which went through every piece of my body right to my soul's core, over and over again.

"The consultant paediatrician was very sensitive. She had tears in her eyes throughout the conversation. She told us how 95% of little ones with Edward's pass away in their mummy's tummy and very many do not live more than 24 hours following birth."

Despite their utter desolation, the couple soon found strength to carry on for the sake of their little girl.

Thinking of the parents whose babies didn't survive the birth, they give thanks for little Matilda and as Claire explains found the will to look forward to the days they had with her.

She says: "We realised how lucky we were to have experienced pregnancy and to have witnessed the joy of our baby being born alive and we went into Team Matilda mode, living for now and just decided to give her every experience we could in what time we had with her, no matter how long or short it would be, and that's what it became.

"We asked people to send their presents and cards because we wanted to make what was a completely abnormal situation as normal as possible. It was great to be able to put her own wee clothes on for the first time and we videoed that as a milestone, and also opening her presents, so instead of her first steps it became about her first outfits, her first teddies and her first bath in hospital."

On Monday, August 5, 2013, aged nine days old, the couple were able to take their little girl home for the first time.

Staff trained the new parents on how to care for Matilda, delivering her oxygen, monitoring her SATs and feeding her via a tube.

Even though she was very ill on the day she left hospital, and at one stage the couple feared she might not make it home, they persevered, hoping for the best.

Claire says: "Matilda's daddy proudly carried her out of the front door of the hospital.

"She was very ill that day and we feared she may pass in the car or maybe only stay an hour. But Matilda had other ideas and she made it through the front door and gave us 76 joyful days at home with her.

"Once home we were able to share Matilda more easily and, of course, proudly show her off to family, friends, colleagues, strangers, whoever. Without night cover Kris and I were like passing ships for most of the day.

"Matilda was a proper little girl who hated being set down more than five minutes. She was very vocal about this. So, I held and cared for her during the day and Kris held and cared for her at nights, with a few hours in the late afternoon/evening for family together time. By this point in the day, however, it was often too late to go out, especially as autumn approached."

It was then that Hospice at Home nurses stepped in and allowed the couple to sleep at the same time so that their waking hours could be spent building memories with Matilda.

The couple discovered that palliative care wasn't just about pain relief; it was about making Matilda's life as special as possible for her and her family.

Palliative Care Week is being fronted by the All Island Institute of Hospice Care who this year want to highlight the 'At Home' service, which allows someone who has a life-limiting illness to live their life to the fullest.

And that's what Claire and Kris were able to do for the short time they had Matilda.

"Matilda visited her nursery and her garden, met her pets and did some art. She had adventures to the beach, where she felt the sea breeze and heard children playing," Claire says.

"She experienced seasons changing, from feeling the summer sun, to hearing autumn leaves crunching.

"We celebrated Matilda's amazing one-month birthday at our special place, Malone House, where Kris and I were married. We celebrated her two-month birthday at Kiltonga duckpond where she heard the birds singing.

"The duck pond had become one of our special places. Matilda had adventures to garden centres, cafes, restaurants, a family photo shoot, birthday parties and visited the homes of family and friends.

"Most of this was possible thanks to the hospice nurses who also did absolutely beautiful artwork with Matilda. When we came down in the morning to a new painting, it was as though Matilda had brought it home from nursery.

"All her paintings are just beautiful and my heart beamed with pride. It also gave me ideas for paintings I could do with her too.

"We did lots of art together and our house is now filled with paintings made by her own fair feet. I love to look at them all and see the 'Made by Matilda' stickers on the back."

Matilda passed away peacefully at home in her parents' arms on October 25, 2013. All three were snuggled on the sofa, under her stargazer.

Her mum adds: "We are so proud of her. Whilst her life-expectancy and duration was limited, the content of her life was not.

"Matilda's life was filled to the brim with love, joy, people and experiences and we can't thank the hospice nurses enough for allowing that to happen."

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