Most women dream of achieving a perfect work/life balance, but would you take a year…
After many years of IVF and the loss of six babies, Cath Day was finally pregnant again. After losing two of her three triplets in utero, things were looking good with the surviving baby…up until their 19 week scan.
“Mike and I found out our baby had a problem with her heart. The cardiologist wasn’t sure as to the extent of the problem, but was pretty sure she would need immediate surgery,” she says.
“We were completely devastated. I was still grieving the loss of the two triplets when my grief, thoughts and love instantly went to this poor little remaining triplet. We had never had a pregnancy we enjoyed, as the fear of losing a baby was overwhelming given our history; but we were nearly at the stage where we thought, ‘this is it, this time it’s going to work’, only to hear the crushing news of a heart defect.”
Cath and Mike were given the very strong odds that their baby would have a chromosome disorder that is common with their baby’s type of heart defect and were given the option of termination, something Cath says, “was never going to happen.”
After 20 weeks expecting the worst, and a few admissions to hospital, Audrey Grace was born at exactly 39 weeks, “pink and beautiful”, according to her proud mum.
Audrey has truncus arteriosus (malforming of the aorta and pulmonary arteries), a VSD (hole in the heart), and an interrupted aortic arch (a piece missing from the aorta). She had a five hour open heart surgery when she was just six days old; her heart the size of a walnut and her arteries like apple stalks. At eight weeks Audrey had her second five hour open heart surgery and “was like a new baby”.
After three months in intensive care including infections and collapsed lungs, the family finally got to come home to Canberra. It was here they discovered Miracle Babies Foundation – Australia’s leading organisation supporting premature and sick newborns, their families and the hospitals that care for them.
Audrey is just one of the 45 000 newborn babies in Australia each year who require the help of a NICU or SCN. 25 000 of these babies are born premature, and up to 1000 babies will lose their fight for life.
As the mum of a premature baby, I know the journey all too well. I describe NICU as a ‘bubble’, because while you’re there, everything outside almost ceases to exist. Your sole focus in on being there for your child, and for helping them get better and come home. You make connections with the families and staff, you support each other, because until you are in the situation you can’t possibly comprehend how heartwrenchingly hard it is.
Miracle Babies Foundation aims to make the journey through the NICU – and life afterwards – a little less lonely through their Nurture Program, which includes a free play and support group, in-hospital support for families currently in the NICU, and a 24/7 helpline. For Cath, support from “people who know what you’ve been through” has been invaluable. As she says, “Everything is less scary when shared! It has been fabulous to chat with other parents who have also been through a challenging and unique experience.”
Belinda Duffy, ACT Events Coordinator with Miracle Babies, is mum to “cheeky, happy” three year-old Flynn, who was born by emergency caesarean after Belinda went into labour 28 weeks.
“Flynn’s journey was relatively smooth through the NICU and SCU. He was breathing on his own after 5 days. We had the ups and downs of any journey through the NICU, it was extremely stressful and upsetting, but compared to so many others Flynn was strong even though he was born so early.”
It was during their nine weeks in hospital that Belinda learnt of Miracle Babies, and joined the NurtureGroup program after Flynn went home.
“I was very reluctant to join a traditional mother’s group because of the journey we had been on and I felt that I wouldn’t get the support, I was still feeling very raw from the experience,” she says.
“The group was so supportive because everyone had experienced the same thing. I found it very cathartic to be able to relate to mothers who had been on a similar journey.”
Belinda says that Miracle Babies Foundation’s service all build on each other, providing families with support at every stage of their journey.
“The in-hospital support helps parents through the immediate stress, shock and fear of the unknown when they have had a premature or sick newborn. The NurtureGroup provides a safe, healthy place for premature and sick newborns as they grow and continued support for the parents. There is also the NurtureLine that provides 24 hour support for people.”
And this weekend, the Miracle Babies Foundation Family Fun Day will provide an opportunity for families of premature and sick newborns to connect to celebrate their miracle babies and the journey of these families, and to hear about the services available locally. With lots of family fun activities, mini markets, jumping castle, face painting, Old Kentucky Animal Farm, a visit from Santa, Kenny Koala and a Fire Engine, I personally can’t wait to see the look on my miracle baby’s face and reflect on how far we’ve come since those difficult early days.
The North Canberra NurtureGroup meets fortnightly on Thursdays, 10am-12 at Nellie Hall in Melba.
What: Miracle Babies Foundation Family Fun Day
When: 11am to 2pm, Sunday 30 November 2014
Where: Yarralumla Woolshed, Cotter Road. Yarralumla
How much: Gold Coin Donation on Entry