Muireann Shionagh Dunne
My Baby Muireann
Mandy Dunne shares the moving story of her little baby daughter, Muireann, who was diagnosed in the womb as having a life-limiting disability, Trisomy 13. Doctors said she would die before or soon after birth, but little Muireann lived for six weeks and brought great joy to her family during her short life.
Those words haunted me...
"While I was pregnant, Muireann was diagnosed with Patau syndrome, also known as Trisomy 13, which means she had three of the No 13 chromosome instead of two, a condition doctors refer to as being 'incompatible with life'. Those three words haunted me. My daughter was going to die. As you can imagine that devastated myself and Tom, my husband, and our kids. We continued through the pregnancy praying our little girl would prove everyone wrong.
As well as Trisomy 13, Muireann had holoprosencephaly, a condition where the brain doesn't form as it should. She also had a Dandy Walker malformation - a large fluid filled cyst on her brain. This cyst filled an area of her brain that hadn't formed at all.
Doctors prepared us for the worst by telling us that the chance of Muireann being stillborn was extremely high, especially given the related conditions as well as the trisomy.
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"There is no foot too small that it cannot leave an imprint in this world." |
Muireann was born on the 15th of April 2012, weighing 4lbs 10oz. She wasn't breathing, her pulse was faint, and she was expected to leave this earth just minutes after getting here.
Muireann, however, had other plans, and slowly began to take in breaths of air and decided she wasn't going anywhere just yet. :)
During her first two days of life, Muireann stopped breathing twice in the hospital and we cuddled and tried to revive her in our hospital room by gently blowing air into her little lungs, which slowly led her to start breathing again.
When she was born, we said that her two tiny fists were in the fighting position, ready to take on the world. And fight she did, for six whole weeks.
ABSOLUTE FAVOURITE photo of myself and Muireann... it was taken by the lovely Deirdre Travers on the day Muireann was born ... I'd waited for what felt like years to have this precious moment with our amazing daughter.
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I never imagined I'd be bringing her home
On Tuesday the 17th of April we brought Muireann home. She was two days old. I was so happy because I never imagined that I'd be bringing her home! Those next few days were so crazy because we didn't know what to expect - we were terrified of something happening to her. We were always watching for a change, for a sign that she was failing.
This was taken on the day she opened her eyes for the first time. This was a very proud day in our house and a major achievement for our little lady x
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But as the days went on Muireann grew stronger, started putting on weight, and we couldn't believe she was doing so well! Days turned into weeks and we enjoyed every minute she was in our lives...going for family days out - these were days I always hoped and wished we'd have with her, but never imagined we'd get! Her brothers and sister were crazy about her... they were always having cuddles!
For six amazing weeks Muireann showed us that miracles do happen. Against all odds here she was, alive and doing well! She was even beginning to open her eyes and smile!
Dinner date with Daddy... This was taken on Muireanns first family day out
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On the 26th of May we took Muireann on her first family break away, another little precious moment in her life! We woke at 3 am and knew that Muireann wasn't doing well. She wasn't herself and wasn't keeping her feed down.
Muireann with her brothers and sister
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We woke the kids and came home, I guess deep down we knew what was coming. At 6pm on Sunday 27th of May, Muireann passed away in my arms, she was six weeks old that day.
That was the worst day of my life. No parent ever expects to lose their child. Our hearts broke that day and our life once again changed. Things would never be the same in our home with our youngest child no longer here.
To Muireann and all the little angels... xxx
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She made a huge impact on those she met
The days that followed were the hardest days of my life. Since Muireann died life has been so hard without her. She left us with many precious and fantastic memories. She made a huge impact in the lives of her family and many others in her short life.
As her parents, we are so very proud of all she achieved in her six weeks of life. She showed us there is so much to be grateful for in this world. Muireann was an amazing little girl and will always be in our hearts.
I'd do it all again to have even ten minutes to give her one more kiss and cuddle. We love you, Muireann! x
To our beautiful little angel Muireann.. happy birthday from your brothers and sister... xxx
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A lovely card from Aoibheann to her little sister
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I marked your name in the snow .. from your brother Jack
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I made this butterfly with your initials on it... from your brother Conor
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A place I consider beautiful
Written by Conor, Muireann's brother, (16yrs)
A place I consider beautiful may seem strange but to me it is the most beautiful place in the world. It is the place where my sister sleeps in a covered wooden bed with her favourite toys and a picture of my family, her blanket, earth and her precious flowers. It is her grave.
Looking back I remember the day we brought her to her final resting place. It was a warm day, not a cloud in the sky, birds sang and butterflies flew. My family all came to my house, where my sister was being mourned. They said such things as "she was so young" and "she's in a better place now" when I heard people saying this it filled me up with anger. The thoughts going through my head were "yes she was so young, too young, no one deserves to die after only six weeks on this earth, and a better place, surely there was no better place for her than here with her family. I spoke to no one for the whole day, during the funeral I had no tears left to cry and as we lowered her down that hole I turned and saw my dad, the proud strong man that I have known , reduced to nothing but sorrow. But now we are all back to our lives but that day will be in my thoughts forever.
A couple of weeks after the burial my family and I decorated her grave. We covered the earth with white stones, in a way I suppose they symbolise how pure her spirit is. And around the grave with wooden curbing's, we didn't like the idea of stone, so cold and hard and lifeless. Perched on top of the stones are three white baby angels holding small cross shaped lights. The grave is full of flowers of bright colours and during the spring the flowers are full of life with butterflies and bees. Dotted around the grave are little garden lights that light up at night and shine so bright you can see them glow from across the graveyard. A beacon of light vast as she was when she was with us. All of these factors together make her grave not a reminder of the pain of loosing her but a monument to the joy she brought to our lives in the short time we had with her.
It is not just the look that makes it such a beautiful place but also the memories that are brought up by it for example the day she was born or the way she used to kick and how she could fill my mother with happiness with just a smile. She would cry when she was put in her basket and would stop as soon as she was picked up. For me the fondest memories of her is the day she was born when I first held her. She was so small and delicate. I would give the world just to be able to hold her again. All of these memories are brought to the surface when I visit her grave.
Even though her grave is not yet finished as we still have to get her permanent headstone, to me it is beautiful. And when her headstone is placed on the grave it will read Muireann Shionagh Dunne 15/04/12 - 27/05/12 There is no foot too small that it cannot leave an imprint on this world
"Muireann was born, two fists in fighting position... ready to take on the world. And fight she did, for six whole weeks." |
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TRISOMY 13 or PATAU'S SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage but research has also found that children with Trisomy 13 or live on average for 7 days after birth, while almost 31% live for more than a month, and almost one in 10 live for more than a year.
Rasmussen SA1, Wong LY, Yang Q, May KM, Friedman. Pediatrics. Population-based analyses of mortality in trisomy 13 and trisomy 18. 2003 Apr;111(4 Pt 1):777-84.JM. http://www.ncbi.nlm.nih.gov/pubmed/12671111
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