Karen Keast talks to SIDS and Kids supporter Fiona Sly who helps parents who have experienced stillbirths and miscarriages.
Q: How did you become involved in SIDS and Kids?
A: I became involved when we had our first miscarriage here, after moving to Ballarat from Mt Gambier. I got in touch with SIDS and Kids and they were fantastic. I knew I wanted to repay SIDS and Kids somehow so I became a parent supporter. It's purely on a volunteer basis. I began in 2004 and I love it. I take great pride from it. I know that what I am doing is helping somebody else. It's also good to be able to talk about your own children, whether it's the children that we have lost or our living children. It's good to be able to tell others your story as well.
Q: Tell us about your pregnancies.
A: My husband, Jeffrey, and I have had nine pregnancies. The first one was about 12 years ago. I had an ectopic pregnancy, where it was caught in the tube at about eight weeks gestation. I was doubled over in pain, ended up in hospital and we lost it. The second pregnancy was Daniel, who is now 11. That was a great pregnancy and he was born fit and healthy. I had a miscarriage with the third pregnancy. I was about eight or 10 weeks at the time. The fourth, and the hardest of all, was the next one - Benjamin Robert. He was stillborn at 40 weeks and two days. I went into labour in the morning and he died in labour, two hours before he was delivered. We chose to have an autopsy done and found he had the common sore throat virus, Strep B. It's a mystery to us how he contracted it. It was well into all of his vital organs. They believe he contracted it about 12 or 13 hours prior to labour and that if he had lived, he wouldn't have lived for long. It was horrific but Jeffrey and I say it was also one of the most beautiful experiences we have ever had. We got to spend some time with him, almost 24 hours, and our family was able to come and be there with us.
Q: How did you cope with that experience?
A: It's something I don't think you ever get over. My mother died six months before we were married. When we found out Benjamin had died, I remember saying to Jeffrey: ``He has gone to be with Mum.'' I can picture him in my mum's arms and my mum looking after him.
Q: What happened with your other pregnancies?
A: Rebecca came next. She's now 7. The next one was a miscarriage at about 10 weeks and the one after that was another miscarriage, at about 13 weeks. Then we had Adam. He died at 18 weeks gestation. I went in for a routine check and there was no heartbeat. They brought on labour and delivered him. We actually got to see Adam. He looked perfect. His skin was mostly clear, it wasn't properly formed. As he was only 18 weeks we weren't allowed to have a funeral but we had him cremated. A baby isn't recognised as being a person until it's at 20 weeks or 400g in weight. Our ninth pregnancy was Joshua. He's now 18 months.
Q: What feelings and emotions did you experience with your loss?
A: There was emptiness. One was being alone. Even though you have your partner I think we both just felt alone. You feel like no one understands. There's blame and an overwhelming feeling of sadness. You feel disbelief, guilt and life just seems to spiral out of control. There are the insensitive things people say and do, because they don't know what to say. Some would walk on the opposite side of the road. It was a feeling of loss and hope of dreams and plans for the future. When I went into labour with Benjamin, we dropped Daniel at someone's place and told him he would soon have a little brother or a sister - it's then hard to share the sad news with family. It was meant to be a joyful time and we weren't prepared for what happened.
Q: How do you help other parents?
A: It's normally a phone call. They just want to talk to someone who has been there, someone who knows what they are saying and empathises. Every loss is a different loss. I would urge anybody who has suffered any form of miscarriage to reach out. It's a loss and there is a grieving process. At the moment I am supporting a mum with subsequent pregnancies - she is looking at wanting to become pregnant again. It's not all doom and gloom but it helps to talk. There's help out there.
Q: Tell us about SIDS and Kids.
A: SIDS and Kids Victoria provides free bereavement counselling services to about 400 families each year whose child has died suddenly and unexpectedly during pregnancy, birth or childhood. This includes stillbirth, SIDS, drowning, a car accident, fire, illness or homicide. There's a 24-hour helpline staffed by grief counsellors and trained parent supporters. SIDS and Kids also support the parents of thousands of new babies born each year in Victoria through the promotion of safe sleeping practices. We look after anybody who has lost a child, up to the age of 18 years. It's also not just for the loss of a baby now - it doesn't matter how long ago you lost your child. Some people access our help many
years down the track. In Ballarat we have also got an Empty Arms support group and support programs for kids and adolescents. The kids and adolescents groups are for any kind of loss; it could be an uncle or a grandparent. It's an environment where they can talk but they also play games and do art and craft. It's part of teaching them that it's all right for them to talk and share their story.
Q: Red Nose Day is celebrating 21 years of raising money for SIDS and Kids on June 27. How can
people support the cause?
A: People can buy a car nose magnet, a light-up pen, a soft toy and lots more. Red Nose merchandise is available from a variety of stores. Without the public's support, SIDS and Kids just wouldn't exist.
Q: What's been your greatest reward in becoming a parent supporter?
A: It's helping others but it's also something I know I can give back to our children. I can do it in memory of the children we have lost. I can do everything for Daniel, Rebecca and Joshua but for Benjamin, Adam and the other babies we have lost - this will mean that their deaths haven't been in vain - they have had meaning.
FOOTNOTE: For more information visit www.rednoseday.com.au or call 1300 308 307.