Beyond the bright lights: the human face of SIDS and Kids ACT Christmas Lights

Posted on 11 December, 2014

A couple of weeks ago, Canberra made history as the SIDS & Kids ACT Christmas Lights in the City broke the GUINNESS WORLD RECORDS™ title for the world’s largest LED light image display. But as beautiful as the 1,194,000 lights are, it’s important to remember that they’re raising money for a serious cause.

SIDS and Kids ACT dedicated to eliminating sudden and unexpected death in children from conception to six years of age and providing programs and services aimed at reducing the impact of such a death. It provides bereavement support to anyone affected by miscarriage, stillbirth or the death of a child during birth, infancy or childhood; and safe sleeping education to parents, grandparents, health and child care professionals who care for babies.

Susan Innis and her family know only too well the support that the organisation can provide. In 2001, her son Tristram was stillborn, a tragic event that caused untold heartache. This is her story.

SUSAN’S STORY

I was 15 weeks pregnant when I went for the triple blood test – our results came back with a 1 in 18 chance of our baby having trisomy 18 (sometimes called Edwards Syndrome). My doctor was shocked and had the blood work redone twice…he had NEVER seen those sort of results in such an early test. We weren’t sure what to think – this was before we had a home computer and internet access at our fingertips so we really didn’t know what it was all about. 

Trying to put on a brave face, we continued with the pregnancy, hoping for the best and waiting until I was 20 weeks and could have an amnio done. I was incredibly ill through out the pregnancy…looking back I think my body was telling me this was not meant to be. On the day of the amnio, baby was really active, which was very unusual and this made the procedure painful and difficult. As they started taking measurements, they queried me about my dates, telling me there was no way that the baby inside me was 20 weeks old. After the amnio he stopped moving and the diagnosis was confirmed: our little boy had full blown trisomy 18 – every 18th chromosome had three #18 chromosomes instead of two. 

Friends with internet access printed off piles of paper with information: only 5 – 10% of trisomy 18 children live beyond their first year, usually with severe medical problems. The majority die before birth, as our son did. We never felt him move again after the amnio.

My husband and I decided to induce labour at that stage rather than prolonging the pain and confusing our other two sons (aged two and four) with Mummy carrying a dead baby in her tummy for another three months.

He was delivered at John James Hospital in September 2001. I was 24 weeks into my pregnancy but he was smaller than a baby at 15 weeks. My Mum made a little shroud for him to be put in, but it was too big. We were unsure of what he would look like. Trisomy 18 babies often have facial deformities, webbed hands and feet and many other skeletal abnormalities. My mother-in-law helped the nurses to bath him and dress him, they wrapped him up in a special blanket and brought him to me to say goodbye.  His face was so tiny and perfect to look at, but he had no ears. The nurses took ink prints of his feet – they were the same size as my thumb…his hands were too malformed to print.

Looking at his beautiful little face, I finally felt at peace. As much as I wanted to hold him forever I knew that he wasn’t meant for this world, and his time here had been full of pain. No mother ever wants that for her child. We named him Tristram, a name from Arthurian Legends, because his place in our family would only ever be as a story told, not a memory shared. Later we found out that Tristram means great sorrow.

We chose to donate Tristram’s body to  medical research – we needed to know that his existence had some meaning in the larger world. That through him, more could be learned about this condition and maybe someone else could have an easier path from it. We never went through a formal funeral, for which I am grateful. We have a little garden in our yard with a statue and every September the bulbs bloom and we remember our third son and brother.

After losing Tristram, I spiralled into depression without even realising it. It took me nearly 12 months to see the person I had become and know I needed help. In the early days following our loss, I had spoken on the phone with a couple of grief counsellors who had experienced similar situations, which did help, but it took me a while to realise I needed more.  

SIDS and Kids offer group sessions for families who have experienced similar losses supported by a counsellor. It was at these meetings that I met two other mums who had lost little boys to trisomy 18 a few months after we lost Tristram. We were able to share, cry and comfort each other…we could see the journey we all had to take through someone else’s footsteps and keep heading towards that place where there was some light.

It’s been 13 years since we said goodbye to Tristram. I still think of him every day, I look at the children at school and wonder which friendship groups he would be a part of. I share his memory with my three sons and husband. The pain never goes away…I don’t really want it to, but I have found a place for it in my heart and it shares my journey through life.  

SIDS and Kids ACT was so important to me here, as I was on the other side of the country to all of my family, as so many Canberra people are. There was no family member I could lean on – I had to learn to lean on strangers, but strangers who understood and knew exactly what I was going through.

Sadly in the years since I first made contact with SIDS and Kids, I have had several friends who have also found themselves dealing with the loss of a child.  My mum always said there was no greater cruelty than for a parent to outlive their child. Sadly I think she is right. Three years ago, my best friend lost her first daughter to a different genetic condition, but in much the same way as we lost Tristram. Once again SIDS and Kids became a life line for us both, as she struggled with her loss, and I with trying to help her. 

Obviously SIDS and Kids do so much more than bereavement counselling – they have saved countless childrens’ lives with their safe sleeping studies, but for those of us who have had to say goodbye to our little one, they have been the shoulder to cry on, the warm arms to hug and the hearts that stay constant and true.

SEE THE LIGHTS, SUPPORT A GREAT CAUSE

With generous support from Canberra CBD Limited, SIDS and Kids ACT Christmas Lights in the City is a spectacular site illuminating the city centre with millions of lights that has smashed the Guinness World Record™ for the Largest LED Image Display in the World. The lights are on display from London Circuit through to Bunda Street until Wednesday 31 December. One of the highly anticipated features of this year’s event is the iconic merry-go-round, a breathtaking sight decorated in 200,000 lights.

From this Saturday, the Christmas Lights in the City will be open from midday every day through to New Year’s Eve, especially for parents with little ones who can’t get out late at night… and the lights look amazing during the day! Santa will be coming on Saturday and Sunday from 1pm to 3pm so parents can get photos of their little ones with Santa under the world record lights.

This is a truly magical event – see the full schedule of opening times here.

Photo credit: image of woman sitting in empty nursery from shutterstock.com