Baby Matilda who lived for 90 days shows us that every moment of life is precious

02/09/17 Belfast Telegraph

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

As Palliative Care Week continues Bangor mother Claire Gray told the Belfast Telegraoh about how she and husband Kris, with the incredible help of Hospice at Home nurses, made the tragically short life of their baby girl one brimming with joy and love.

Little Bangor baby Matilda Gray only lived for 90 days – but these were the most precious and unforgettable 90 days for her devoted parents Claire and Kris. The couple received the devastating news that their little girl had only a very short time to live when she was only five days old. Despite their incomprehensibly devastating news, Matilda’s mum and dad were determined to give their special girl the best life possible regardless. The realisation that Matilda would not live long enough to reach the usual milestones we often take for granted – her first birthday, her first words, first steps, and her first day at school – were heart-breaking. However, because her family would not be able to witness these treasured milestones, it motivated them to start making new memories and capturing moments to last a whole lifetime. They vowed with unwavering commitment to make every minute count.

Claire and Kris celebrated and recorded baby Matilda’s first bath, her first day outside of hospital, her first day at home, her very first visit to the beach and many more wonderful adventures which are now a beautiful and touching tribute to their baby girl. The couple dotingly refer to this tribute as ‘The Amazing 90 Days of Miss Matilda Gray’ andhave shared their inspiring and heart-warming story to illuminate the incredible care provided by the Hospice at Home service to mark Palliative Care week, taking place this week up until Saturday the 9th of September.

Matilda needed around the clock care and nurses from the Hospice at Home service stayed several nights weekly in order to give Claire and Kris a chance to sleep, so that the family could enjoy their days together creating lifelong memories.

This help made all the difference in allowing Claire and Kris to capture as many treasured moments as possible. The nurses even created unique artwork using Matilda’s little footprints which adorn every room in the couple’s home in Newtonards.

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 Matilda, their first child, in 2013, there was no obvious sign that anything was wrong until 34 weeks when it was discovered that the baby was very tiny 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 given the devastating blow that she had Edwards’ Syndrome, a life-limiting condition. 

Edwards' Syndrome, also known as trisomy 18, is an extremely 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 spoke to the Belfast Telegraph about how her much-longed for first pregnancy was transformed into a living 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."

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

Paediatricians immediately broke the news that little Matilda appeared to have special needs and she was quickly taken to intensive care. From the offset, the couple started to think positively about Matilda’s future and how they would support her needs - oblivious that the worst blow had yet to be dealt.

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?'"  

"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 found out just five when five days later, on August 1 that her daughter had the life-limiting condition Edwards' Syndrome and was unlikely to live to see her first birthday.

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.

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

Hospital staff trained the new parents on how to care for Matilda, delivering her oxygen, monitoring her SATs and feeding her via a tube. Despite being very ill on the day she left hospital, and at one stage the couple were afraid she might not make it home, they persevered, always daring to hope 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.

"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."

At that point, 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 began to understand that palliative care wasn't just about pain relief; it was about making Matilda's short, precious life as special as possible for her and her devoted family.

Palliative Care Week is being fronted by the All Island Institute of Hospice Care who want to highlight the 'At Home' service, which allows those with a life-limiting illness to live life to the full with as much joy and comfort as possible. That is exactly what Matilda’s parents were able to do with the help of Hospice at Home. They experienced so many incredible highs and made countless precious memories throughout 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.

On October 25th 2013, little Matilda passed away peacefully at home in the arms of her parents, with all three snuggled on the sofa.

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."

Services for sick children such as the Home Hospice provide places where parents of children who were diagnosed with a terminal condition can share their memories, their joy, their pain, and their love. Perinatal hospice care should be made a priority. It creates a society where the lives of our much-loved children are celebrated, and where we can reach out to parents in similar situations.

These hospice services are an invaluable resource and source of hope for families and their children who, above all else, seek the gift of time together. A culture where children are acknowledged must be manifested; children whose lives are shortened are no less precious than any other child. In fact, many parents say they are the most special children of all. Every person deserves to be loved and celebrated - and we all are worthy of protection. Little Matilda’s story is such a precious one and provides a beautiful glimpse into the dignity and sanctity of the shortest of lives. Abortion in difficult cases such as Matilda’s should never be considered a worthy or acceptable option. Being pro-life means that no child is discriminated against, and we must be consistent in our pro-life ethic, never accepting the barbarity of abortion, always striving to uphold the dignity and unrepeatable beauty of each and every human life. 

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