Thank you for taking the time to visit our gorgeous baby girl Matilda's page.  In memory of Matilda on her 1st Birthday, our friend Laura McParland is running the Dublin Half Marathon.  This takes place on Monday 4th August 2014.  Upon that same Monday last year Matilda undertook her own marathon trip from Craigavon to the Ulster Hospital. Indeed for at least the last 2 weeks of her life, Matilda's little body ran a marathon every day to stay here.  All our Love , Claire, Kris & Matilda XXX

Matilda's Story

Kris and I were thrilled when we found out we were expecting our longed for first child.  We always had a strong feeling we were having a girl and at 8 months 'Bump' was named 'Matilda'.  We didn't know the meaning when we chose her name, but we now know it means strength and suited her just perfectly!  Our much loved 'bump' was greeted every morning with the 'Hello Song' and read 'One Ted' every night. Following Matilda's birth, the repertoire of songs and nursery rhymes grew alongside her story collection.  She was read to and sang to every day of her precious life.

Although I'd had a healthy pregnancy and typical 20 week scan, I was often concerned about my lack of weight gain and seemingly small bump.  At 34 weeks my fears were confirmed as doctors advised our baby was very little and not growing.  By 37 weeks we were informed baby had to come out.  I felt utterly terrified that I was not going to meet my baby alive.  Due to Matilda's predicted size, we required a neonatal cot on standby.  A shortage in our home hospital meant we were ambulanced across trusts prior to delivery.

At 12:50pm on Sunday 28th July 2013, we met the centre of our universe in Craigavon Area Hospital.  With her jet black hair and her sweet baby smell Miss Matilda Margaret Ruth Gray had arrived.  Weighing in at 4lb 6oz and with a few little 'Matilda quirks' we were advised within minutes by the paediatrician that she she would be our little 'special one'.  We looked forward to the love, joy and delight with which such a special little person would fill our present and our future.

When Matilda was 5 days old, we found out that our precious little munchkin was only being lent to us for a short time.  On that day, 1st August 2013, our world fell apart as the alien words 'Edwards Syndrome' 'Trisomy 18'  and 'severely life limited'  echoed round our heads and tore out our hearts.

We were devastated. How could this be true? Matilda had made it to full term...  She had survived birth with a little help via an elective section... She was 5 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 upon every physical piece of my body right through to my soul's core... over... and over... and over again when we heard that  'fewer than 10% make it to their first birthday', 'it is very unpredictable', 'Matilda could pass at any moment of any day'.

The consultant paediatrician was very sensitive.  She had tears in her eyes throughout the conversation, but there was no way of making the stark facts less horrendous.  She told us how '95% of little ones with Edward's pass away in their Mummy's tummys and very many do not live more than 24 hours following birth'. On hearing this our hearts broke for all those Mummies and Daddies and their precious babies.  We realised how lucky we were to have experienced pregnancy and to have witnessed the joy of our baby being born alive.  

Within minutes of hearing Matilda's horrendous diagnosis, we felt immense appreciation and pride at the gifts our daughter had already given us, not least those of love and time, as she was already an amazing 5 days old and loving life on Earth.  Matilda being alive was a miracle.  We dried our flowing tears for our baby's lost future, and flipped into Team Matilda, living for the now!   Our first goal was to take our little sugarplum home. 

On Monday 5th August 2013, aged 9 days old, Matilda's first step towards home began.  Dressed in her special pink tutu, she 'neenawed' to the Ulster Hospital's Neonatal Unit in a big yellow taxi!  When we arrived, I took her to the window, pointed to Scrabo Tower, and told her, "our house is just over that hill.  We will go home together Matilda".  The NNU staff were brilliant and did everything they could to get us organised.  As new parents they trained us in all the typical areas as well as in Matilda's nursing needs. They built up our confidence regarding delivering Matilda's oxygen, monitoring her SATs and most importantly feeding her via her NG tube - as despite a very strong "Maggie Simpson" suck, a bottle was too tiring for her.  When we made the leap of faith and took Matilda home we had complete confidence in ourselves as Team Matilda.

On Matilda's 2 week birthday her Daddy proudly carried her out the front door of the hospital.  She had achieved our goal. We went home together. 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!  She made it through the front door and gave us 76 joyful days at home with her, our wonderful, miracle, bounce-back baby daughter.

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 5 minutes!  She was very vocal about this! So, I held and cared for her most days and Kris held and cared for her most 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.

Throughout Matilda's time at home we had support from Hospice at Home.  When they nursed Matilda overnight, Kris and I were able to go to bed and get up at the same time.  Matilda really needed two parents to go out on adventures in the car.  Hospice at Home meant we were both refreshed together and so could take Matilda out'n'about. Hospice at Home  enabled us to make memories in as many places as possible!

Whilst at home Matilda visited her nursery and her garden, met her pets and did some art.  She had adventures to the beach, where she felt the seabreeze and heard children playing.  She experienced seasons changing, from feeling the summer sun, to hearing autumn leaves crunching.  We celebrated Matilda's amazing 1 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 duckpond had become one of our Mummy, Daddy, Matilda special places.  Matilda had adventures to garden centres, cafes, restaurants, photoshoots, birthday parties and to the homes of family and friends.  

One of the highlights of Matilda's life was thanks to Tiny Life who gave us individual Baby Massage sessions in their amazing Sensory Room.  It was there that Matilda lay in relaxed bliss, enjoying an experience that was truly perfect for her.  All of these adventures were only dreams when Matilda was born, but our small and mighty munchkin gave us the gift of time which enabled dreams to become memories.  The most wonderful memories of all are of the three of us in our home all snuggled on the sofa wrapped in mummy, daddy, Matilda love.

Matilda was a calm, content baby with such inner strength, will and determination.  She fought bravely against her frail little body and stayed with us for a whopping 90 days.  As it turned out Matilda's passing was actually very predicable.  Our beautiful strong cherub passed peacefully at home in our arms on 25th October 2013, whilst hearing the story of her life. Of her we are infinitely proud. 

Whilst Matilda's 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. 

She is Matilda Margaret Ruth Gray.
She is deeply loved.
She is immeasurably missed and
She is remembered with every single beat of our hearts.