A Melbourne mother was once advised to consider ending her pregnancy. Now, a US surgeon has told her that her baby daughter could eventually walk, run and play sport after a series of operations estimated 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 and her femur, or thigh bone, is severely underdeveloped. The joints in her hip, knee and ankle also failed to form normally.
Doctors plan to reconstruct the affected joints and gradually lengthen Daisy’s leg, with the aim of helping her walk independently.
The first operation, a 12-hour procedure scheduled for when Daisy is two, is expected to cost about $548,000 on its own.
Daisy’s mother, Racquel Ferraro, told Our News Outlet that she and her partner first learned there could be a problem during their 21-week ultrasound.
The scan revealed that Daisy’s thigh bone was measuring four weeks behind in development, but Ms Ferraro initially hoped it would eventually catch up.
That changed when her doctor called.
‘As soon as I answered, the doctor kept saying, “I’m sorry, I’m sorry, I’m sorry … this is serious.” He didn’t know what to say,’ Ms Ferraro said.
‘He said that when things are this serious, termination should probably be considered. That was when I really started to spiral. How had we gone 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 a potential problem during her 21-week ultrasound
The three-month-old faces a lengthy reconstruction program expected to continue until her mid-teens
Ms Ferraro and her partner, who also have two sons, Noah and Navy, waited for additional test results to understand what Daisy’s diagnosis could mean for her future.
After doctors said the condition appeared to be limited to Daisy’s right leg, Ms Ferraro decided to continue with the pregnancy.
‘Some days I hoped for the best, while on other days I prepared myself for the possibility of having to terminate and give birth to my child. That is probably the most traumatic thing you can prepare for,’ she said.
‘We had the amniocentesis, and it took another two weeks for the results. They said everything appeared to be isolated, but they couldn’t guarantee it.
‘From then on, I just had to try to enjoy the rest of my pregnancy.’
Although concerns about Daisy’s future remained, many of Ms Ferraro’s fears eased after her daughter was born.
‘When she came out, all of that went away. I felt incredible. I love her so much. She’s absolutely beautiful.’
The family did not fully understand the extent of Daisy’s condition until she was five weeks old, Ms Ferraro said.
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 the family had investigated treatment options but found few clear pathways.
‘There aren’t a huge number of these surgeries being performed because Australian doctors see such a limited number of cases,’ she said.
‘Every time we visited a different doctor, we received a different answer, and that was frightening in itself.’
One doctor advised the family against reconstructive surgery, warning that 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 personally emailed her with reassurance about Daisy’s prospects.
‘I want to reassure you that I have treated many patients like Daisy during my 40-year career,’ the email said.
‘Daisy will walk, run, jump and play sports. All of this is achievable.’
The Cinnamon Baby founder is releasing a collection called ‘Every Daisy Grows Its Own Way’ to help fund her daughter’s treatment
Ms Ferraro said her first consultation with Dr Paley taught the family more than they had learned in the months since Daisy’s diagnosis.
‘Hearing that she would be okay and able to do all these things was everything I needed to hear,’ she said.
Daisy is scheduled to have her first major reconstructive operation at two. The 12-hour procedure will focus on rebuilding her hip, knee and ankle joints.
At three, she is expected to begin a series of limb-lengthening procedures, including three operations on her femur and one on her tibia. Treatment is anticipated to continue until she reaches her mid-teens.
The final operation will involve placing a plate in her unaffected leg to help correct the difference in length.
The complex reconstruction plan comes with an estimated price tag of $1.5 million.
Ms Ferraro said the first and most expensive procedure will cost about US$375,000, or approximately A$548,000.
To help fund Daisy’s care, 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’s petals.
She has also teamed up with the CFD Foundation, which has created a dedicated sub-fund for Daisy that allows supporters to make tax-deductible donations.
Ms Ferraro said she remains hopeful about Daisy’s future and is grateful for the support from family, friends and the wider community.
‘She is the happiest baby and smiles at absolutely everyone. You can’t look at her without feeling joy. I just want Daisy to know how loved she is,’ she said.
‘I want her to know she can do everything and more. I will make sure she understands that she can pursue anything she wants in life.’
