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A miracle baby girl who was born with major internal organs outside her body has defied the odds and is about to enjoy her first Christmas with her doting parents.
It was after their 12-week ultrasound that Sunshine Coast couple Hannah, 27, and Simon Cox, 31, were told the shocking news that their unborn daughter Elsie had a “giant” omphalocele – a condition in which a baby’s organs grow outside its body in the umbilical cord.
Elsie’s stomach, liver and intestines were all outside her tiny body, presenting a huge challenge for her medical team at the Mater Centre for Maternal Fetal Medicine at Mater Mothers’ Hospital – which had to ensure her organs did not rupture during birth.
On May 30, 39 weeks into Ms Cox’s pregnancy, a complex caesarean section was performed by Mater Maternal Fetal Medicine Fellow Dr James Aridas to deliver Elsie, who weighed 2.56kg.
The Mater Centre for Maternal Fetal Medicine is an internationally recognised service, providing expert assessment and advice to women with the most complex pregnancies.
Dr Aridas said a team of more than 10 medical professionals collaborated in the successful delivery and care of Elsie and Mrs Cox, including surgeons and anaesthetists, as well as neonatology, midwifery and nursing staff.
“We needed to be careful with Elsie to not put pressure on her abdomen or the umbilical cord during the delivery,” Dr Aridas said.
“This was definitely the biggest omphalocele I have seen in my career.
“It was a very delicate, challenging delivery – but everything went to plan.”
According to Mater Director of Neonatology Dr Pita Birch, Elsie’s omphalocele was one of the largest successfully treated at Mater Mothers’ Hospital.
Dr Birch said omphaloceles affect one in 4,200 live births, but “giant” ones are much rarer and often associated with other anomalies. One in five babies born with a giant omphalocele do not survive.
“There was a plan to attempt at least a partial closure of Elsie’s abdomen, but she was too sick and had a number of respiratory problems at birth,” Dr Birch said.
Dr Birch said care for Elsie had been a “big team effort”, including input from her parents who were “very attentive and actively involved” in her care.
Mrs Cox said she had braced herself for bad news when her GP told her to bring her husband to her medical appointment for additional support following her 12-week scan.
“When we were told about the complexities associated with the omphalocele and the possibility of our baby not being compatible with life, that was hard to hear,” Mrs Cox said.
“We understood her condition was rare, unusual and complex. I was told it would be a hard road and that her organs growing outside her body would affect her chest, lungs and spine when she was born.”
The young couple never gave up hope and were determined to continue with the pregnancy, despite being warned by doctors their daughter faced a possible six to 12-month stay in hospital.
“I was very determined to continue with the pregnancy and learn about Elsie’s condition,” she said.
“It was a bleak time – we were trying to be excited about having our first baby but the prognosis wasn’t good. It was hard to stay optimistic at times.”
Six months on, Ms Cox said she never lost hope due to the support of her family and church.
“We lived one day at a time and that’s how we got through it. We savoured every part of the journey,” Ms Cox said.
Mrs Cox said Elsie’s condition had affected her respiratory system, as her ribs and chest have formed into a cone shape and she may require surgery when she gets older.
But otherwise Elsie, who spent almost two months being cared for around-the-clock at Mater Mothers’ Hospital, is a thriving and happy baby.
“Her tummy is pretty much flat now; she has a little bump which looks like a hernia but it’s actually just her intestines still moving down. Her body still needs some time to heal.”
The couple are looking forward to celebrating their first Christmas with their amazing girl.
“What we have gone through this year has felt like a lifetime. I look at photos and see how far Elsie has come and think ‘she’s our miracle’,” Mrs Cox said.
“It’s been a big journey and she’s worth every minute of it. We are so amazed about what her body has done and what God has done for us.
“We never imagined we would be home for Christmas with Elsie and sharing her with our friends and family is a precious joy.”
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