Noah Hackett
Baby Noah: His favourite song was Wake Me Up by Avicii
Noah Hackett was diagnosed with Trisomy 13 and lived for 3 days surrounded by the love of his family. His mother Agnes says he was their brave little hero, and that his favourite song was Avicii’s ‘Wake me up’. This is her letter to baby Noah.
"You started to cry when they were putting the line in, so I kissed your little head and said “Mammy’s got you”, and you moved your head to snuggle my kisses"
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Dear Noah,
"Well son, I miss you so much! Every day you are on our mind, and I think about all the good stuff we did. I hope you do too.
When I carried you safe inside, protected in my tummy, you loved the noise and bustle of the family. When your brothers and sisters played around you, you loved that. Avicii’s big hit was out at the time “Wake me up”, and the kids would blare that song, and every time you heard it, I thought you were going to dance your way out. I’d stop what I was doing and dance away side to side, the kids would fall around laughing and give you a kiss; oh we had such fun.
When you decided to say hello to all of us you were only just gorgeous! Such a handsome little boy, to say we were madly in love is an understatement. You were 7lbs 13, and you were perfect to me. They kept telling me what was wrong, but all I could see was my beautiful baby.
Your hair was black with golden tips, and all of us were mad about you, you were lovely and chubby, and I could feel you in my arms. All his brothers and sisters held you and loved you and kissed you. I can still smell your lovely smell, and see your dimples.
Here I am in all my finery...
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With the scans they found a pocket of fluid on the brain and one kidney wasn’t working and the other kidney had cysts on it, but they told me your little heart was perfect. Somehow I knew that. Once they diagnosed Trisomy 13, I felt that they gave up on you. They even took your line out, which was giving you fluids.
I remember on the Sunday night in hospital, we were getting ready for bed, all of your visitors were gone home, and Dad was standing at our room door, and he said “Will I turn off the light?” You turned to Dad’s voice, so I jumped up, myself and Dad, and we started playing, and calling the kids, and you turned your head each time. Then Dad lay down beside you and you moved in closer to him. That’s our screensaver now, that photo, all the smiles.
So good to meet you dad...
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We were very excited and told the doctor, so they put your line back and agreed to help a little. You started to cry when they were putting the line in, so I kissed your little head and said “Mammy’s got you”, and you moved your head to snuggle my kisses, and the doctor said “he knows his Mammy, go on take him, loads of loving, you got your brave hero.”
Aren't I just a chip off the old block!...
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We wanted you to do all the things your brothers and sisters did, so we sang to you and told you stories, and because Dad is a mechanic, you got a smudge of oil on your ear, because every time the kids come home from the garage they have oil on their ear, and you weren’t missing out on that one.
I love all my brothers... and they love me...!
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On the day of your funeral we sat at the top of the church, and a massive ray of light came through the stain glass window right on to your coffin and to me and your dad.
You taught me so much, you still do little man! And thank you so much for picking your sister, she is magic. I remember how you told me she was on the way. When I asked Adam to go up in to the attic, I was going to give away some girls stuff and all of a sudden, your song blared from the TV, we looked at each other, put it all back in the attic, and I found out your sister was on the way! New Year’s Eve at 12 o’clock all of us were doing the countdown at your grave, and your song comes on the radio!
There were so many people to meet me when I got here, I felt quite famous...!
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Your birthday we all went down to the grave for the time you were born, we let off balloons and you sent shooting stars all over the sky! You’re magic, I always say it. Well little prince, until our souls can be together, we love you and we know you’re here, we just can’t see you, you little messer, we see your magic though!
Having a moment with my mam...!
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Love you every breath we take and more, XXXXXXXXXXXXXXXX
And X from us all
Mom, Dad, Adam, Dylan, Samuel, Darren, Ethan, Cole, Nevaeh, Fauna and your nephew, Cody! Everyone!
PS. I see you like the plaque, I had one made for the house, sometimes it sways and I know that’s you saying hello. XXXXXXX"
This is all my family...!
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"Well little prince, until our souls can be together, we love you"
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Agnes also wrote that:
We all just poured all our love, all of us and the aunties and uncles and grannies, into those few days. We wanted them to be memorable. His little life was important and I don’t want him forgotten, he is part of our family.
The priest was a rock; we had Noah baptized and when the priest came to help us get ready for the funeral, I was holding him in my arms and rocking him, even though he had passed, I just didn’t want to let him go. But he was very kind and probably knew I was in shock, he even has a copy of my picture of him with Noah in his house.
They said Noah was ‘incompatible with life’, that was such a horrible thing to say, when we were trying to deal with the shock, and when he was still alive and kicking. I still wonder if they could have done more. There were temps on duty the night he passed away and they dealt with his passing very badly, and I hope no-one else goes through that. We need things to be better for babies like Noah and for families.
RIP little angel, love you forever.
Love you Mam...!
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And you too Dad...!
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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. Some studies have reported a significant decrease in median survival over the decades and there is concern that this might be due to the withholding of medical care, especially when there is a prenatal diagnosis.
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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Links
The Experience of Families With Children With Trisomy 13 and 18 in Social Networks |
