In July 2013, we published Samara’s story: a much loved baby with PFFD. It followed the journey of parents Michele and Adam Coolahan through the discovery, during pregnancy, that their daughter had Proximal Femoral Focal Deficiency (PFFD) and Fibular Heminelia.
The story touched so many hearts and opened up conversations about dealing with unexpected pre-natal test results.
Michele wrote to me after publication to thank me for telling Samara’s story and also to explain why it was important for her to share her journey. “If we could help just one family during those early stages of diagnosis then we can change the outcome and also change the way in which a doctor relays information. Termination is not always the first option,” she wrote.
She went on to tell me how Samara is growing, and how she has been busy doing research and making plans for Samara’s future.”We are all really well. It’s school holidays here and we have got a full couple of weeks ahead of us including Samaras appointment with the orthopaedic consultant on Thursday 18th!!!!! She is doing so well! She started crawling at six months, standing at seven months and is now starting to coast along the furniture, which considering the difference in her legs is unbelievable! She is such a joy, a true gift from God – I still get butterflies in my tummy when I look at her!
She has really taught me to be present and live in the moment.
“A couple of months ago I started researching more about PFFD with the hope of meeting other families in Australia who have children with this condition. All of the forums talk about a doctor in Florida. I decided to email him just to ask his opinion and to see if there are any other options. To my utter amazement he replied within two days and requested a copy of Samara’s x-ray.
“Within three days he replied again and said that he could lengthen and that he had lots of Australian patients who travelled to Florida for the surgery! The first operation would be when she is two and that would be to perform hip, knee and ankle surgery. After that we would have to return every 2-3 years up until she is 15years old for lengthening.
“We would have to stay for 3-4 months at a time for the aftercare and physiotherapy. Within two days of receiving this email I was contacted by some of the families here in Australia who have gone through this process with him! It was so wonderful to speak with them and to not feel so isolated in the decisions ahead of us”
But together with the good prognosis for Samara’s treatment came some concerning news about its cost. Of course, healthcare in the United States doesn’t come for free, and Michele and Adam were shocked to discover that the price for just one operation would be $180,000.
Michele wrote, “Sometimes I feel like I am standing at the bottom of a mountain looking up and deciding which path to take. We are very blessed that we have time on our side. I feel that if this is the journey we must take then it will become clear on how to proceed and as you know I have great faith and I will be guided on how to raise the money.
“The Australian representative for this doctor has a contact on 60minutes and they are willing to do a story to help get federal funding for families who are not in a position to pay. Adam and I have looked and thought about this from every angle – from how we could get the doctor to come to Australia and train other orthopaedic surgeons to ways in which we could find an Australian orthopedic surgeon to train in America.
“If we only had Samara then we would probably move to Florida! But because this is not the case we really have to think about the whole family and the impact on them.”
Michele and Adam are concerned about the effect of Samara’s treatment on their three other children. It is not just the prohibitive cost involved but also the time and travel required to get the best result for Samara.
“One of my concerns would be that the other children would resent Samara for the disruption in their lives. But if we don’t go ahead with it would Samara resent them for not having the opportunity of having a leg?”
With humility and grace these are decisions which we must make for our beloved girl.”