lost childhood… frail limb… where do they get this stuff!

There are so many orthopedic doctors out the who say these things to parents of newborn babies with FH… They say that kids who have lengthening don’t have childhoods, they spend their lives in hospitals, their limbs are frail, they’ll be in pain all the time, they’ll have long term sided effects from the pain meds and the icing on the cake… They’ll get an infection and have to have an amputation in the end anyway!

NONE OF IT IS TRUE! How is it ethical to try to scare people into having their child’s limb amputated? And if their not liars then where are all the kids who have had limb legthening and have frail limbs and lost childhoods? Good luck finding them!

Seriously, every child that I have met at the RIAO has been amazing! Yes there are hard moments when going through lengthening and surgeries but our children have just as much joy as any other child! Every life has hardship but I would argue that my son is still extrememly fortunate compared to most children in the world. His childhood is intact and his leg is strong!

Nick’s had no long term side effects from pain meds (he was never on them long term) or infections, no psychological trauma from the 10 or so days he has spent in the hospital in the last 8 years! Fibular Hemimelia is part of Nick’s life. It is not who he is. It’s not an everyday issue.

Look my kid is awesome! Really he is. I received the most wonderful email from his teacher therefor I have official documentation of his awesomeness. She basically said he is always doing what he should, if he’s not doing his work he’s helping others or offering to help his teachers! He is a joy to teach.

Nicholas is special because he is himself and accepts himself. He is a confident kid and honestly more so than many kids I know. To say I am proud would be an understatement. Can you see though why I am so angry that doctors tell parents such ridiculous things about kids who have limb lengthening! RIAO kids disprove it all!

2 thoughts on “lost childhood… frail limb… where do they get this stuff!”

  1. I’ve never heard of this leg lengthening. I don’t know what RIAO is either, but an interesting blog. Doctors can really put you off, make it hard for you to make a considered decision.

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  2. RIAO stands for Rubin Institute for Advances Orthopedics, which is where my son is treated. Itis part of Sinai Hospital of Baltimore. Limb lengthening generally involves correcting deformities and growing new bone. Most kids with FH end up with a limb length difference so they have their shorter leg lengthened. Lengthening usually involves wearing an external fixator for several months while the bone is essentially pulled apart after having been cut in surgery. The fixator is generally kept on while the bone consolidators and then when the fixator is removed a cast is worn. A lot of this is changing with internal devices used in new ways. My son’s leg had grown 11cm through lengthening.

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