A Melbourne mother who was advised to consider ending her pregnancy has been told by a US surgeon that her baby girl could one day walk, run and play sport after a series of operations expected to cost $1.5 million.
Three-month-old Daisy was born with two rare and complex conditions, proximal femoral focal deficiency and fibular hemimelia.
Daisy’s right leg is shorter than her left as her fibular, the smaller bone in the lower leg, is missing and her femur, the bone in her thigh, is severely underdeveloped. Her hip, knee and ankle joints also did not form properly.
The surgeon plans to rebuild those joints and lengthen Daisy’s leg to help her walk independently.
The first operation, a 12-hour procedure planned for when she is two, is expected to cost $548,000 alone.
Daisy’s mother, Racquel Ferraro, told the Daily Mail she and her partner first learnt something was wrong at her 21-week ultrasound.
The scan showed Daisy’s thigh bone was four weeks behind in development but Ms Ferraro was hopeful the bone would ‘catch up’.
Then her doctor called.
‘As soon as I answered the phone, the doctor was like, “I’m sorry, I’m sorry, I’m sorry… this is serious.” He just didn’t know what to say,’ Ms Ferraro said.
‘He said when things are this serious, you should probably consider termination as an option. That’s what made me really spiral. How did we go from A to B to termination?’
Daisy was born with proximal femoral focal deficiency (PFFD) and fibular hemimelia, two birth defects affecting the formation of bones in her right leg
Racquel Ferraro (pictured) said she and her partner discovered something was wrong during her 21-week ultrasound
The three-month-old will undergo an extensive reconstruction journey, with treatment expected to continue until her mid-teens
Ms Ferraro and her partner, who also have two sons, Noah and Navy, waited for further test results to better understand what the condition might mean for Daisy’s quality of life.
Ms Ferraro chose to continue the pregnancy after doctors said the condition appeared to be confined to Daisy’s right leg.
‘Some days I was hoping for the best, and other days I was preparing myself if I had to have a termination to give birth to my child, and that is probably the most traumatic thing that you can prepare for,’ she said.
‘We did the amniocentesis. That took another two weeks to come back, and they said everything looks like it’s just isolated, but we can’t guarantee.
‘So from that point, I just had to try and enjoy the rest of my pregnancy.’
She said many of her fears eased after Daisy was born, despite concerns about her daughter’s future.
‘When she came out that all went away. I just felt so amazing. I love her so much. She’s absolutely beautiful.’
It was not until five weeks after Daisy was born that the family understood the full extent of her condition, Ms Ferraro said.
The mum-of-three explained the family will travel to the US for treatment after seeking additional specialist opinions about Daisy’s condition
Daisy’s treatment is estimated to cost $1.5million
Ms Ferraro, who founded Cinnamon Baby, a baby and children’s clothing brand, said she and her partner have explored treatment but there have been few options.
‘There’s not a huge amount of these surgeries taking place because Australian doctors only see a very limited number of cases,’ she said.
‘Every time we went and saw a different doctor, we were getting a different answer, and that was a bit scary in itself.’
One doctor even warned against reconstructive surgery, claiming it would potentially ‘destroy’ Daisy’s childhood.
The family ultimately explored treatment overseas after other parents recommended US orthopaedic specialist Dr Dror Paley.
Ms Ferraro said she ‘burst into tears’ after receiving a personal email from the surgeon offering reassurance about Daisy’s future.
‘I just want to reassure you that I have treated many patients like Daisy over the past 40 years of my career,’ the email read.
‘Daisy will walk and even run and jump and play sports. All of this is achievable.’
The mother, who owns popular children’s clothing brand Cinnamon Baby, is launching a line called ‘Every Daisy Grows Its Own Way’ to help with treatment costs
Ms Ferraro said she learned more during the family’s first meeting with Dr Paley than she had in the months since Daisy’s diagnosis.
‘Hearing that she’s going to be okay and will be able to do all these things was all I wanted to hear,’ she said.
Daisy is due to undergo her first major reconstructive surgery at age two, with a 12-hour procedure focusing on her hip, knee and ankle joints.
At three, Daisy will begin a series of leg-lengthening procedures, including three on her femur and one on her tibia, with treatment expected to continue until her mid-teens.
Her final surgery will involve inserting a plate into her unaffected leg to help correct the difference in leg lengths.
But the extensive reconstructive journey comes at a cost, estimated at $1.5million.
Ms Ferraro said Daisy’s first surgery, the most expensive of the planned procedures, will cost about US$375,000 (approximately A$548,000).
To help cover the cost of Daisy’s treatment, she is launching a collection on Cinnamon Baby called ‘Every Daisy Grows Its Own Way’.
The line features a graphic which uses Daisy’s toe print from her little leg for the petals.
She has also partnered with the CFD Foundation, which has established a sub-fund for Daisy where supporters can make tax-deductible donations.
Ms Ferraro said she is optimistic about Daisy’s future and there has been an outpouring of support from the people around them.
‘She is the happiest baby. She smiles literally at everyone. You can’t look at her and not be filled with joy. I just want Daisy to know that she is loved,’ she said.
‘I hope for her that she just knows that she can do everything and more. I’m going to make sure she knows she can do anything she wants to do in life.’
