Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
Mila was born with atrophied, non-opposable thumbs, shorter than usual radius (forearm) bones and cardiac malformations. This was quite a shock to her parents, Maxime and Bibin, as nothing unusual had been picked up in scans throughout their pregnancy.
Mila was referred to PMH when she was just four days old and is under the care of a number of departments including Plastic Surgery, Occupational Therapy, Cardiology and Genetics.
The first issue her team set about correcting was her thumbs as without opposable thumbs Mila would find it difficult to do everyday things like grasping and picking objects up.
In the past year, Mila has had surgery where her two “mini” thumbs were amputated and her index fingers were transformed into thumbs. Post-surgery, she has responded well to sessions with her Occupational Therapists to strengthen and develop her new thumbs.
Maxime, Mila’s mother, is thrilled with how well she is doing.
“Mila is such a happy, confident and social little girl. Thanks to her surgeries, she is able to hold pens and toys like other children her age. She wouldn’t have this dexterity if it wasn’t for all the care and treatment she received from the Plastic and Occupational Therapy Departments at PMH so we are incredibly grateful for what they have done.
“Mila’s team have done a beautiful job creating lovely thumbs for Mila. You can hardly notice that there is anything different about her little hands until you actually count her fingers as she as only has three instead of four.”
Mila’s on-going support and treatment includes occupational therapy sessions every six weeks and wearing splints on her forearms at night to help lengthen her bones.
She has also been undergoing a series of genetic tests to confirm that she has a condition called Holt-Oram syndrome which is characterised by skeletal abnormalities of the hands and arms along with heart problems.
“At first it was really hard for Bibin and I to accept that there was anything vaguely wrong with our beautiful baby as we are both young and healthy. Never for a second did we imagine that Mila would be born with any physical malformations,” explains Maxime.
“It took quite some time, almost a year, for us to come to terms with things. The fact that Mila is so happy and able to do things that other children can is what has made the difference. The wonderful care and support that we as parents have received from the team at PMH has also been a big part of our acceptance.
“We are now learning to deal with the way other people look at Mila, which is often with pity. While she is a little different, she is happy. The main message I like to share with others is that being different is okay, and that being a little different doesn’t mean that Mila is less happy, less beautiful or will achieve less in life.”
The ongoing support the Foundation receives will help fund research into conditions like Mila’s and enable her medical team to access the latest equipment to assist with her treatment. It will also help ensure visits to the hospital as less daunting by providing moments of fun through a wide range of complementary services including music and art therapy and family BBQs.
You can show Mila, Maxime and Bibin how much you care by making a donation today