The role of the Stillbirth Foundation Australia
In February of this year, Max turned four. Penny Ryan and Adam Perrett celebrated their first son's birthday as they have always done every year with a trip to the zoo, red balloons, champagne and cupcakes. Harper, Max's younger brother who is about to turn three, and Monty, the eight-month old, thoroughly enjoyed the annual event.
To anyone watching this vibrant family they would agree this was the perfect way to celebrate any young boy's birthday.
But Max's fourth birthday is not the only occasion being celebrated. Penny and Adam acknowledge that this day is also important for marking the four years they have survived without Max.
Max was born in Sydney in February 2006 at 40 weeks and 5 days. He was stillborn. Stillbirth is when a baby dies whilst inside its mother and can occur at anytime from 20 weeks until immediately before birth.
Max had died before birth, unexpectedly, following an uncomplicated and healthy pregnancy. Instead of leaving hospital with a gorgeous bundle of joy in their arms, Penny and Adam only had a myriad of confusing emotions - disbelief, sadness, grief, guilt, and yet importantly love.
On Max's birthday in Australia, it is highly likely that another five babies were also stillborn. It is probable that the world of another five families, like Penny and Adam, were also turned upside down. It is almost certain that these five families are still reverberating today, and every passing birthday is remembered.
Stillbirth is the silent loss, and the one that Australians have been shy to discuss. Each year in Australia, over 2,000 babies are stillborn, and the stories of those they say are 'born sleeping' often go unmentioned. Preparation for such an event is uncommon, and pregnant women are not apprised of the possibility that their baby might die in the womb.
It is disturbing that, in an age of enormous technical and medical advances, the death rate of stillborn babies is not declining nor well understood. The Stillbirth Foundation Australia was established to encourage and fund research to ensure that the stillbirth rate begins to decline. The Foundation is one of the leading organisations focused on raising awareness within the broader Australian community about the incidence of stillbirth, but also invests heavily in funding research to discover the answers to why babies die.
Emma McLeod, Founder and Director of the parent-initiated charity created the organisation after her own daughter, Olivia, was stillborn. Passionate about encouraging and funding research into stillbirth, Emma has created a hub where parents who are asking the question 'why?' can contribute to finding an answer.
"The Foundation is driven by every parent's need to know the reason for the death of their child," said Emma. "We have a central purpose firmly focused on the raising of money to fund research into the causes of stillbirth. In just five years, we raised $800,000 through fundraising events and from donations, however, to continue to fund the necessary research work, the Foundation needs to start raising at least $1 million a year.
"The reality is that there are parents and family members and friends who are all touched by a stillbirth, and the sheer weight of not knowing 'why' is overwhelming. All of that energy and desire to do something can be harnessed by the Foundation, and can be invested back into finding an answer. This is not just about one person's efforts. This is about people working together to try and help prevent the gaping pain and the aching loss from being experienced by someone else."
The need to investigate the causes of stillbirth is echoed by the medical fraternity. Jonathan Morris, Professor of Obstetrics and Gynaecology at University of Sydney, believes that research is probably the only answer.
"Improving health outcomes for many conditions may be achieved by better systems, equipment or preventative measures however, the prevention of stillbirth can only be achieved by medical research," says Jonathan. "Only research can offer the necessary new insights and discoveries that can make real differences. But medical research is a costly competitive business. There are a plethora of needy causes that all deserve funding. Insufficient funds are made available for stillbirth research."
As Penny cuddles Monty, she believes strongly that more information about stillbirth should be available to pregnant women and more research needs to be done on finding out why otherwise healthy pregnancies can end in stillbirth.
"We don't know and we will never know why Max was stillborn," said Penny. "The doctors can only give you their best guess as they don't have the answers."
"While talking about babies that can and do die is very hard, it's something that needs to be done. The more everyone is aware there are many thousands of people directly affected each year by this, the more support those affected will receive and the more attention stillbirth research gets."
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