A Melbourne mother who was advised to consider terminating her pregnancy has been told by a US surgeon that her baby daughter could eventually walk, run and play sport after undergoing 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.
Her right leg is shorter than her left because the fibula, the smaller bone in the lower leg, is absent, while her femur, or thigh bone, is severely underdeveloped. Her hip, knee and ankle joints also failed to form normally.
The surgical plan involves reconstructing those joints and lengthening Daisy’s leg to give her the best chance of walking independently.
Her first operation is expected to take 12 hours and is planned for when she is two years old. That procedure alone is estimated to cost $548,000.
Daisy’s mother, Racquel Ferraro, told the Daily Mail that she and her partner first learned there could be a problem during their 21-week ultrasound.
The scan indicated that Daisy’s thigh bone was four weeks behind in development, but Ms Ferraro hoped it would eventually ‘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 rare conditions affecting bone development in her right leg
Racquel Ferraro (pictured) said the family discovered there could be a problem during her 21-week ultrasound
The three-month-old faces an extensive reconstruction program, with treatment expected to continue into her mid-teens
Ms Ferraro and her partner, who are also parents to two boys, Noah and Navy, waited for further test results to understand what Daisy’s condition could mean for her quality of life.
She decided to continue with the pregnancy after doctors said the condition appeared to be limited 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 anxieties eased after Daisy was born, although concerns about her daughter’s future remained.
‘When she came out that all went away. I just felt so amazing. I love her so much. She’s absolutely beautiful.’
Ms Ferraro said the family did not understand the full extent of Daisy’s condition until five weeks after her birth.
The mother-of-three said the family will travel to the US for treatment after seeking further specialist opinions about Daisy’s condition
Daisy’s treatment is expected to cost $1.5 million
Ms Ferraro, founder of baby and children’s clothing brand Cinnamon Baby, said she and her partner had investigated treatment options but found few available choices.
‘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 advised against reconstructive surgery, warning it could potentially ‘destroy’ Daisy’s childhood.
The family eventually looked overseas after other parents recommended US orthopaedic specialist Dr Dror Paley.
Ms Ferraro said she ‘burst into tears’ when the surgeon sent her a personal email reassuring her about Daisy’s prospects.
‘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 children’s clothing brand Cinnamon Baby, is launching a collection called ‘Every Daisy Grows Its Own Way’ to help fund her daughter’s treatment
Ms Ferraro said she learned more at the family’s first meeting with Dr Paley than she had during 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 scheduled to have her first major reconstructive operation at the age of two. The 12-hour procedure will focus on rebuilding her hip, knee and ankle joints.
At three, she will begin a series of leg-lengthening procedures, including three operations on her femur and one on her tibia. Treatment is expected to continue until she reaches her mid-teens.
Her final operation will involve inserting a plate into her unaffected leg to help correct the difference in leg length.
The lengthy reconstruction process is expected to cost $1.5 million.
Ms Ferraro said Daisy’s first surgery, which is expected to be the most expensive, will cost about US$375,000, or approximately A$548,000.
To help pay for Daisy’s treatment, she is launching a collection through Cinnamon Baby called ‘Every Daisy Grows Its Own Way’.
The collection features a graphic incorporating the toe print from Daisy’s smaller leg as the flower petals.
She has also partnered with the CFD Foundation, which has created a sub-fund for Daisy to accept tax-deductible donations.
Ms Ferraro said she remains hopeful about Daisy’s future and has been overwhelmed by the support of family, friends and the wider community.
‘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.’