The RCH Bereavement Group is a group that meets monthly, providing bereaved families with peer support, information and a place to come and talk about their child and living with their loss. It was established in April 1989 and was a joint initiative by the RCH chaplains, a child psychiatrist, a nurse counsellor and the social work team.
It is now run by the RCH Social Work Department as part of The Family Bereavement Support Program which also includes an annual Memorial Day Service as well as an annual Bereaved Sibling Day.
Here, three brave families share their stories and talk about the comfort and support they find in the Bereavement Group.
By Joanne – Mum to Abigail
It was a surreal experience the first time I told my story to a group of complete strangers. But as those strangers shared their own experience, that feeling soon turned into a sense of kinship. Parents who had also lost their children could understand the depth of grief I felt. After that first night at Bereavement Group I realised that I was not alone.
Our daughter Abbie was born on the 19th of October 2011 and I immediately understood what people say about becoming a parent. It is the most life changing and beautiful event, and one that should not be missed regardless of how long it lasts. At three months of age after struggling to feed and gain weight Abbie was diagnosed with a rare form of lung disease called Congenital Lobar Emphysema (CLE). A lack of cartilage in Abbie’s airways made them collapse when she exhaled causing a continual trapping of air and making her work very hard to breathe.
At nine months old Abbie’s breathing became worse and we spent a month on Sugar Glider (Medical Care Ward). After a lot of consultation with the Respiratory Medicine team Abbie underwent a lobectomy where part of her right lung was removed. Initially the operation looked like a success as her breathing normalised but three weeks later the symptoms returned. At around 11 months of age Abbie started to have concerning episodes where she would turn blue, at first they didn’t last long but over time they became more and more severe and by 13 months we were back at the RCH, this time in Rosella (Intensive Care). The hypoxic episodes became very serious; she was so unstable that she was constantly sedated.
On the 1st of December she underwent more surgery, this time to remove the remainder of her right lung. It had hyper inflated so much that on the chest x-ray it looked to be the size of two lungs. By this time the Respiratory Medicine team suspected that the emphysema was not restricted to her right lung only, if they were correct this would be a form of congenital emphysema they had never seen before. The surgery, whilst very risky, was Abbie’s only chance. Unfortunately their suspicions proved right and whilst she made it through the surgery she struggled to breathe on her own without the ventilator.
On the 8th of December 2012 after a family meeting we agreed to stop treatment. My little girl was taken off the ventilator, I held her in my arms as she took her last breaths. She was surrounded by the people who loved her most, her Mum, her Dad and her Granny K. We admired her beautiful little face, which for so long had been hidden by tubes and tape. Her passing was facilitated by the amazing team in intensive care who made the entire process as good as it could possibly be. It was very peaceful…but she was gone.
I remember thinking after Abbie had passed, “I don’t know anyone who has lost their child, who does this happen to?” I thought that I was alone and nobody would understand what I was going through. Then my social worker mentioned to me about the hospital Bereavement Group. The first time I went was about four months after Abbie had passed. My girlfriend came with me for moral support. As everyone in the group introduced themselves and told their stories I remember feeling overwhelmed. The tragedy of my experience was reflected back to me, over and over again as parents told of how their children had lost their battles with illness or accident. I was both shocked and saddened but suddenly I didn’t feel alone.
By the time she passed Abbie had spent a quarter of her life at the RCH, mainly on Sugar Glider. Whilst our time in the hospital was often under stressful circumstances we did come to think of it as our second home. We were constantly amazed at how caring the nursing team were. Abbie was lucky to bond with quite a few nurses. The Respiratory Medicine team, particularly Associate Professor John Massie and Professor Colin Robertson always took a consultative approach to Abbie’s care. They took the time to talk us through Abbie’s condition, to be as honest as they could and to give us time to ask questions, to think things over and to guide us so that we could make the best decisions about Abbie’s care.
The intensive care team were nothing short of miraculous, they tried so hard to save her and I know they were devastated that they couldn’t do more. On that final day I will never forget the care and respect given to us. Professor Trevor Duke treated us with such kindness and generosity of spirit. I remember the doctors and nurses crying, I know they don’t do their job to loose children and the fact they are confronted by this situation time and time again is a testament to their determination and commitment.
They are extraordinary people and for that reason when Abbie passed we decided to remember her by fundraising for the RCH Foundation through Everyday Hero. On what would have been Abbie’s second birthday we reached our initial fundraising target of $20,000. It was a very proud moment not only because Abbie had continued to make an impact on the world but because she had also given back to the place that had given her and her family so much.
As time has gone on and I have attended more and more Bereavement Group meetings I have been able to share more of my experience of grief and been able to understand how others have dealt with the challenge of getting on with life. We’ve talked about the way that family and friends respond to grief and shared ideas about remembrance. I’ve found it helpful visiting the hospital too. It was our second home so being there to attend group often makes me feel closer to Abbie. It has also made the transition easier, particularly because we spent so much time there. It’s a very special group and I’m so glad that the RCH continue their care of families through this program. Whilst our children have gone, their care has not.
With Claire – Mum to Sian
Sian was born in in September 2006, a beautiful gift for her parents, Claire and Mark. The couple had their new little girl home with them for just one precious week before receiving a call from the Victorian Clinical Genetic Services at the RCH saying something had shown up in Sian’s screening test, performed in hospital when she was three-days-old.
“As any new mum would be, I was so scared and absolutely devastated to find out something was wrong with my baby,” said Claire.
“We were told to come straight to the RCH and we were told that Sian had Phenylketonuria (PKU), meaning she was unable to break down a certain enzyme in protein and would have to stick to a life-long and extremely restrictive diet, because any excess protein that she consumed, would build up and potentially cause brain damage.”
“The diagnosis was life-changing for me, my baby girl was one in 15,000 children to have this condition and I couldn’t believe it. I took it really hard. I saw into the future and saw the life she would have to lead and how restrictive it would be for her,” she said.
In the following years Sian was often in and out of the RCH. She was monitored closely by the metabolic team and any episode of gastroenteritis (gastro) would land her in hospital. At 19 months old Sian was diagnosed with asthma, and then Claire and Mark found out she was anaphylactic to eggs, both leading to even more trips to hospital. Just before she turned four, she was also diagnosed with high functioning autism.
On top of everything brave little Sian was already dealing with, at five-years-old she had to undergo major hip surgery on both her hips to correct hip dysplasia. She spent eight days in hospital and the following six weeks in a wheelchair.
The one week that will stay in Claire’s mind forever started like most other. First there was a highlight when Sian was finally able to get out of her wheelchair and start walking again. Then on the Tuesday, Claire picked her little girl up from what would turn out to be her last day at school.
“Sian’s teacher spoke to me that afternoon and said Sian was really tired and didn’t seem herself. In the previous month she had four admissions to the RCH after severe asthma attacks and we knew her asthma was getting extremely bad,” said Claire.
“I took Sian home and she had another bad asthma attack that night. We called an ambulance and she was once again rushed to the RCH and we spent three nights on the Dolphin (Medical Short Stay Ward). As always the nursing staff there were amazing, they had come to know us so well.
“On that admission I remember spending some really beautiful times with Sian. When she came off the oxygen we went down to the cinema together to see The Lorax and visit the Starlight Express Room. And later that day, they said Sian was doing better and we were able to take her home.
“The following day Sian had a very special morning. Her grandma came over to get her ready and dressed up for her first primary school birthday party. Sian was a very sociable and fun little girl and she was excited about the party. That afternoon we arrived home at 4pm, my husband had to go to work and Sian went to her bedroom to play while I fed her little brother Dane.
“Not long after 5:30pm, Sian came downstairs crying and I remember asking her ‘What’s wrong sweetie?’ and she said ‘Mummy I feel sick’. I took her in to the laundry and she vomited. I knew something was very wrong. I called an ambulance and called my dad to ask him to come over to mind Dane. He also must have known something was different this time to others, because he lives 20 minutes away and he got there in record time.
“The next thing I knew Sian was changing colour, she couldn’t breathe and she was so scared. Then she collapsed and I knew just then that we had lost her. I tried CPR and when dad arrived he took over. The ambulance arrived at the same time as the firemen and there were nine men working on Sian, trying to save her life, but not at any stage could they get a response from her.
“Later they transferred her to the nearest hospital and we followed in the car, but in our hearts, we knew that our gorgeous little girl was gone. That night we lost our precious daughter and I lost my best friend.
“It’s been 19 months now and I know she’s gone and she’s never coming back, but I can’t get my head around the fact that our daughter has died. I see her photo and I just can’t believe my beautiful little girl has died. Everywhere we go and everything we do, I think she should be here with us.
I can’t bring her back and it breaks my heart, and I just miss her every hour of every day,” said Claire.
Not long after Sian passed away Claire joined the RCH Bereavement Group, which she says is her lifeline.
“I go in there once a month and can sit and talk with other parents, it’s the one place where everyone understands and it’s my time to think and talk about Sian and feel close to her. It also allows me to give back and support other parents. It breaks my heart every time there is a new parent, I look back and think I’ve come a long way and I’m not that new parent coming to the group, but I’ve still got a long, long way to go,” she said.
“Sian is blessed to have had so many at the RCH in her life, looking after her. It’s an outstanding world-class hospital and we are indebted to the staff there for what they’ve done for our kids. Sadly the doctors couldn’t make Sian better. As hard as it is the truth is that for some people there isn’t a happy ending. There is another side to the story,” she said.
Last week, Claire, Mark and Dane went to Sian’s primary school to present a ‘Friendship Award’ in her honour, which is presented to two Grade Six students each year at graduation.
“And every year we sign the Christmas card from Claire, Mark, Dane and Angel Sian. Our beautiful girl is still part of our everyday life and she always will be.”
With Donna – Mum to Callum
I lost my boy Callum when he was five years, two months and 19 days old. Callum was always a very cheeky and adventurous boy. He was so full of life, and always on the go. I was over protective with him but only because I knew just how adventurous he was.
On 1 July 2010, Callum was outside playing at his grandma’s house. We could hear him playing the whole time but in a second I realised it was quiet outside and when I looked into the yard I couldn’t see him. I ran outside to look for him but couldn’t find him anywhere so I went over to the neighbour’s house in case he’d wandered there.
When I arrived our neighbours had already found Callum, lifeless in their backyard pool. We pulled him out, called the ambulance and started CPR, but it was too late, I knew he was gone already. When the ambulance arrived I was in shock. It all happened so quickly. All I could think was ‘if he dies, I die too’. The paramedics said there was still some hope and I wanted to hold on to that, but in my heart I knew he was gone. He was airlifted to the RCH and the police drove mum and I to the hospital. Just hours later we all went to the bereavement room to say goodbye to our little boy.
That night I met a social worker who told me about the Bereavement Group. For a long time after I lost Callum I couldn’t bring myself to go but almost a year later I decided to go to the annual Memorial Day Service at the RCH. When I first got there all I wanted to do was run, it was all too much, maybe I still wasn’t ready.
It wasn’t until this August that I decided I was ready to go to my first Bereavement Group meeting. And I’m so glad I did. It’s just so good to be able to tell everyone how you feel because you know they are feeling similar things and they understand. It really brought me out of my shell and made me open up.
Christmas time is the always really hard, I miss Callum so much. At the December Bereavement Group meeting I made a lantern for him and it’s hanging in his room now. I really don’t know what I’d do without that group.
I find it so hard when friends do normal everyday things like show each other new pictures of their children, because I will never have new photos of Callum to show. I know he’s not coming back but there’s always a part of me that still dreams of having him here.