Site seeing – June 6 and 7 – SUFE – what it is and why we’re dealing with it

Unlike my other posts this one is extremely personal. My aim is to highlight a condition that is affecting children around the world and that has serious repercussions for their long term health, physical and mental, and their long-term well being. They say that we know around 2500 people as friends, relatives, neighbours and acquaintances.

SUFE affects approximately 10 per 100,000 children. SUFEs are most common in adolescents 11–15 years of age and affects boys more frequently than girls. The left hip is more often affected than the right. Over half of cases may have involvement on both sides (bilateral). The chances are that someone in your sphere of influence knows of or has a child suffering with SUFE.

Our story

When my daughter was only 12 she had her SUFE; not only did she have this serious medical condition, but also Avascular Necrosis – the most serious form of the disease. She turns 17 later this month and her youth has been unlike that of most of her contemporaries. She had complained of a sore knee for perhaps 3 months before the onset of SUFE and we attributed it to her love of Netball; unfortunately we were wrong in our understanding and assessment.

Just after her 12th birthday, we heard the femur and the ball in the hip part company, it sounded like a snap of the fingers. It is a sound that I hear every night. I relive that moment often. What followed was a journey of ambulances, hospitals, hip surgeries, screws, pins, scars, tears, pain, long and painful physio, recoveries and the incredible guts, determination and bravery of the young woman who carries my genes forward.

This last Friday and Saturday she and I spent more time together in Melbourne’s Royal Children’s Hospital in Melbourne for what we hope is her final teenage surgery. We think that the next surgery for my daughter means a total hip replacement. Her surgeon and her mother and I are all hoping that we can stave this off for as long as possible. Right now our aim is to get her to 25 before that surgery. But nothing in life is a certainty.

Site 1: What is a SUFE [+ Link]

According to the website of her surgeon Slipped Upper Femoral Epiphysis (SCFE or SUFE) is a very common condition in the rapidly growing child. It results in effect a slippage of the femoral head (ball) from the rest of the femur. It is like a fracture through the ball/neck junction, but it behaves very differently. This is due to weakness of the growth plate. Most often, it develops during periods of accelerated growth, shortly after the onset of puberty.

Site 2: What is Avascular Necrosis [+ Link]

Avascular necrosis (AVN), also called osteonecrosis, bone infarction, aseptic necrosis, and ischemic bone necrosis, is cellular death (necrosis) of bone components due to interruption of the blood supply. Without blood, the bone tissue dies and the bone collapses. If avascular necrosis involves the bones of a joint, it often leads to destruction of the joint articular surfaces. Read more about it at the link above.

What we can all do about SUFE and other diseases like them

The best way we can find cures and better treatment regimes for our children and grand children is to make sure that our local Children’s Hospital gets fully funded. That means raising funds and awareness of the medical needs of children. My wife Jan has worked with our local, state and federal politicians to advocate for the disease to be recognised as a critical care incident, and to make sure that it is considered as a serious long term problem that needs to be addressed.

Each year our family help the Royal Children’s Hospital in Melbourne by assisting with the Good Friday Appeal [+ Link]. In addition to raising funds on the streets of Melbourne, we also as a family donate to the cause that has given so much back to our daughter.

Further Reading and Resources

From the Royal Children’s Hospital website:

Alex’s Surgeon’s SUFE Page

A UK website on SUFE

Final words

There is nothing worse than planning for the worst, while hoping for the best. It is soul destroying, despite being very pragmatic. Alexandra has been through so much in her life. So far she has spent more than a day and a half (about 37 hours) on the operating table to try and save her hip. Despite all our best efforts her Doctor’s have advised that her hip is old and aged, and they cannot give her any real idea of when it will fail.

It’s not often that I’ve seen someone given bad news take it so well. Even more so when you are almost 17 and looking forward to your Debutante’s ball. Last night she cried long and hard. Tonight and in a different way it is my turn. Thanks for letting me cry out.