Red Nose Day: Did you know that SIDS and Kids offers bereavement support?

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 Photo: Getty Images

If you wanted to find out about the latest guidelines for safe sleeping and SIDS prevention, SIDS and Kids is probably the first place you would go.

But did you also know that the charity offers telephone support to bereaved parents?

This support was invaluable to Jenny O'Neil, who lost her daughter, Lily, in 2007. "I was 23 weeks into the pregnancy when I noticed my feet and ankles were very swollen. I took my blood pressure at work and it was sky high. I was sent home to rest but two days later, with no improvement, I was admitted to hospital," she recalls.

Jenny and Rob with their daughters Lucy and Emma.
Jenny and Rob with their daughters Lucy and Emma. Photo: Supplied

Once in hospital, things escalated very quickly. Jenny developed more swelling and an intense headache and was diagnosed with pre-eclampsia. She was admitted to the critical care unit where, despite medication, her blood pressure continued to rise. The next morning it was decided that Lily would need to be delivered.

"The situation was devastating and there was a sense of urgency. My husband Rob and I were given 15 minutes to decide whether Lily should be resuscitated when she was born. It was the most difficult decision to be faced with.

"Ultimately the degree of prematurity and the fact we were not in a hospital with neonatal intensive care facilities directed our choice, which was to keep Lily with us and provide comfort care," she says.

Lily was born via emergency caesarean while Jenny was under a general anesthetic.

"I woke to my husband putting a tiny baby girl in my arms. She was not moving, not awake, but her heart was still beating," she says.

"She passed away in her daddy's arms about an hour later."

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Understandably, Jenny experienced a period of intense grief after Lily's death. She had support from family and friends, along with some professional support.

However, when she found herself pregnant again 18 months later, she felt the need to talk to someone who would understand her mixed emotions. She called SIDS and Kids.

"I joined a Subsequent Pregnancy Group and it was instrumental in getting me through nine months of worry, and saw me through the birth of our beautiful third daughter, Lucy," she says.

As well as providing evidence-based education and resources on safe sleeping, SIDS and Kids offers bereavement support for any kind of neonatal or infant death, expected or unexpected, including stillbirth.

"There is no time limit on accessing support and services – SIDS and Kids doesn't just offer support immediately after the death of a baby or infant, but anytime after a loss," Jenny says. "I know that nearly 10 years after Lily died, if I needed to talk to someone about my loss now I would only have to pick up the phone."

Lisa Gelbart is the parent support and volunteer programs coordinator at SIDS and Kids. She says that professional counsellors provide a safe and confidential environment where they can focus on the bereaved family.

"They provide information and support for families, inform families of all the services the organisation provides, and support them in finding their own ways of learning to live with their grief," she explains.  

SIDS and Kids have trained Parent Supporters who are all bereaved parents. They provide further support by having a "shared experience of loss".

Gelbart also notes that the 24-hour helpline provides many bereaved parents comfort, compassion and care. The free service is accessible to every bereaved parent, grandparent and sibling who needs it.

Jenny was so grateful for the support she received from SIDS and Kids that she decided to complete their parent support training so she could "give something back".

"I now provide support to other parents who have lost their babies. And In doing so, in some way I feel I give back to a service that provided such support to me at a critical time," she says.

"It is also a way for me to honour Lily's memory."

The last Friday in June is Red Nose Day. You can get involved by buying a red nose or making a donation: find out more at rednoseday.com.au.

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