Melanie and Sean Manning lost their daughter Mylee to Sudden Unexpected Death in Childhood, and SIDS and Kids helped them through their healing process. Here is Mel’s story, and what lead her and Sean to getting involved with SIDS and Kids and Red Nose Day, helping raise awareness and funds for the cause. This is their story.
Our daughter Mylee was a beautiful 15.5 month old with strawberry blonde hair, big blue eyes, chubby little hands and a personality that lit up a room. She was cheeky and kept us on our toes. Mylee loved playing mummy to her dolls, peek-a-boo, and more than anything she loved her big brother Chase. Chase and Mylee were close, he idolised his little sister, and watching them grow together melted my heart. They were inseparable.
We were a happy little family and our house was filled with that beautiful noise only siblings giggling together can make.
On the morning we lost Mylee, I was up early working from home, and had decided to let the kids have a little bit of a sleep in. Chase and Sean woke up and we were having a really beautiful morning waiting for our little girl to wake up too. It was not unusual for our children to have a nice sleep in like this.
I decided to go and check on Mylee, and from the moment I walked in I knew something wasn’t right as she was still, very still. In my heart I knew she was gone but something in me wanted to believe in a miracle.
Upon discovering her unresponsive, Sean and I desperately performed CPR but when the ambulance arrived we were told that she had already passed away. We had no idea what had happened to our little girl who was running around smiling, laughing, playing only hours before. I was in total shock.
The weeks following Mylee’s passing were devastating. We were walking around in sheer disbelief and confusion. My arms ached to hold her, to feel her warmth again. At first we were barely managing minute by minute, eventually we coped day by day and then week by week. We couldn’t look too far ahead or imagine a future without her. It’s hard to describe how it was in those early weeks. A lot of your focus is on the funeral and the autopsy. The mornings were awful, waking up thinking it was all a bad dream to only relive it again and again realising it wasn’t. We held on to Chase so tightly, he was our little hero and our reason for getting up each day. We so desperately wanted our family to be ok and for Chase to still have a normal happy life.
In the early days and weeks there are a lot of people around to support you, but as time goes on, they fade and people return to their own lives. In itself that is devastating because there’s no escaping for you.
We stayed at my mum’s house for some weeks following Mylee’s passing. Returning home without her was daunting, but when we eventually did we found comfort in the little things… Finger prints on the windows, her room, remembering moments at places in the house.
The first weeks are an emotional experience. We were angry, devastated, confused and we were filled with guilt that we should have done more. I blamed myself terribly, I thought what kind of mother must I be to not have known my child was dying, how could I have not saved her? Part of me will always feel like I let Mylee down.
One of the last times I saw Mylee was at the state mortuary, somewhere no parent should have to ever hold their child. I left and rang the SIDS Foundation straight away saying – tell me what I can do, this can’t happen to another family. Even in our chaos of the early days Sean and I knew we wanted to help prevent another family ever going through what we did in losing Mylee.
Losing Mylee that day was absolutely life changing, she was a part of us. I will always long for her and we will always have part of our family missing. I no longer have the innocence that all children grow up, and I live with that fear every day that another of our children could be taken from us.
I’m really proud of Sean and I, but sometimes we are just holding on by our fingertips. We can’t fix what we’ve been through and I wish more than anything that we could. I long to go back to the time we had Mylee, I ache for it.
The reality is Mylee’s little sisters will never meet her. There was only a two year gap between Mylee and Chase so they would have grown up having each other. There’s 6 years between Chase and Paisley so it’s hard sometimes watching him walk into school alone knowing that he should have his sister there beside him.
Sean and I are different now, I’m not sure how, but we are. There are lots of happy moments that will always be tinged with sadness now. Sean is harder than he used to be, I think he had to do that to protect himself. I do miss the softer Sean sometimes. Sean and I have been through a lot together but we love each other and I’m so proud of us for making it through like we have, we know a lot of couples don’t. For us it was about finding a new kind of normal. I’m glad it was his hand that I got to hold through the devastation and the healing process. I don’t think either of us would have made it through something like this if it wasn’t for the other.
It’s been a tough road and it’s a constant struggle but we refuse to give up. Losing Mylee has taught us a lot about ourselves and each other. We have gone on to have two more children since Mylee, so our house is no longer quiet and is again filled with that beautiful noise of siblings playing together – but in our hearts we know there’s one little voice that’s missing from the squeals and giggles. We will never heal from not having her with us.
The main thing I want to get out of this is I want parents to learn and acknowledge the term SUDC (Sudden Unexpected Death in Childhood). SIDS (Sudden Infant Death Syndrome) is the term used for a child that passes under the age of 12 months for which there is no cause, and SUDC is the term used when the child is over that 12 month age bracket. Mylee was 15.5 months old, and we like many other parents thought we were over the SIDS stage. We’d never even heard of SUDC before.
We now know there is no safe age. We discovered through Mylee’s autopsy that she died of a viral illness and we have since learnt through testing of our other children that it’s possible Mylee had an immune condition. Mylee showed no signs or symptoms and passed without warning, for this reason she could be classed as SUDC with cause meaning that there’s components of her death that we may just never know.
Not knowing isn’t a reality I’m willing to accept, and we will continue to fight alongside SIDS and Kids to find answers and prevent this occurring to other children and families. We can’t do that alone, we do need other families to adopt safe sleep practices and to help raise funds so that we can increase the level of SIDS/SUDC research is Australia.
I am thankful every day for being Mylee’s parent and I wouldn’t swap a moment of the pain because it meant I got to love her, hold her and to be her Mummy.
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Red Nose Day is today, June 24, and is SIDS and Kids’ biggest annual fundraiser. You can support it by buying a red nose, making a donation or fundraising. Find out more about how to get involved and help save little lives at: rednoseday.com.au.
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