Macrodactyly Status, Age 5, Syme Amputation

It has been 4 years since Elise's first surgery to help her right foot fit into normal shoes.  We have had regular abdominal ultrasounds with no irregularities to note given the increased risk of tumor growth in her abdomen.  The difference in her leg length, 3/4'', which we learned about 2 years ago has not increased.  We respect and like the Doctor we've been seeing annually the last 3 years up in Seattle.  Elise has been wearing normal shoes of either 1 or 2 size difference and overall, she's in no pain and runs around fine.  Elise is proud to show off her foot and is still at an age that it all feels innocent in her world.  We've been pretty close to coasting when it comes to Elise's condition.  

The coasting phase has come to an abrupt end.  We are now in an intense emotional time working hard to figure out next steps.  We went to Elise's recent annual check up mentally prepared to discuss her next surgery this Winter.  It is becoming more challenging to find shoes for Elise.  The upward angle of her big toe, and destroying the growth plate in her first toe that unfortunately didn't take during her first surgery are the main reasons why it is time in our minds.  

Our Doctor shocked us by recommending amputation of her foot, called a Syme's amputation.  He spoke to the fact that no one can accurately predict her foot growth going forward and there is the risk that her foot and leg grow at a large enough rate that it could affect functionality.  Amputation would be a "one and done" option which would mean no more surgeries on her foot and maybe only one to address her leg length difference when she's a little older.  

It's very hard for me to visualize Elise without her foot when she moves around in her active life just fine and she is in no pain.  If the Doctor would say Elise has a life threatening tumor on her foot, it would be such an easy decision.  But no, do we amputate to avoid a scenario that may or may not happen?  One option would seem to be "let's just let Elise decide when she's of age."  But it was strongly suggested to amputate sooner rather than later; it's apparently much easier on kids than on adults when it comes to recovery and issues with phantom limb pain.  This is the worst "would you rather" game ever.  Nate and I have to decide for Elise whether to put her through multiple surgeries with an uncertain end state or be one and done and amputate.  All while we have a healthy and happy Elise having no trouble running after her siblings to smack them when she's being her feisty self.  

We are reaching out to our network of doctors and others with macrodactyly and hoping for expertise on the topic and alternative options to help us with our decisions.  No one can definitively say that her foot will stop growing in young adulthood and that scares us.  No one can definitely give us much of anything when it comes to what to expect with her foot and leg.  It is incredibly frustrating. 

Elise starts Kindergarten this year and I'm well aware that her "my foot is super cool and special" view will be tested in the not so far future.  Truth is, I haven't gotten used to the rude long stares from people and the whispers I see when I watch Elise and her surroundings.  Please please please, whoever might be reading this, teach your kids to approach, talk and ask questions.  The blatant staring is just wrong.  I know I'll probably wish for the staring versus the mean words older kids use but I can't say it enough: if you are going to stare which I understand is hard to avoid,  please approach and ask a question. Just a smile is nice too.  Ok, I'm off my soapbox now.  

We have not reached a decision on her next treatment plan.  We will figure it out.  If anyone finds this blog that is also dealing with this condition, please reach out.