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I have a daughter with Bilateral PFFD & Fibular Himamilia.....

Tasha - posted on 02/25/2010 ( 6 moms have responded )

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My daughter was born with bilateral PFFD and she is also missing her fibula! I was just curious to see if there was anyone else here that has a child with the same thing! She is 17m old & is an amazing little girl! She is missing the top part of her femur bone so has no hip joints and her knees also don't bend that much at all, from the waist down she is extremely short. She was 15" long when she was born and is 24" long now! It is very rare so I am having trouble finding anyone that has the same thing as her! If there is anyone on her who is familiar with this I would love to to talk with ya, or if anyone has any questions I would be happy to answer those as well! I look forward to visiting with all you other moms!!

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Tasha - posted on 11/10/2012

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Sorry guys I haven't been on here in forever!! My daughter is now 4 yrs old & doing wonderful!! Thanks so much everyone for responding!! You can find me on Facebook Tasha Buckner Morrow!! Julissa, we found out when I was pregnant that something was wrong with Payten & that she was missing bones, we didn't get her diagnosis until after she was born & one month old... There is no known cause of pffd... If y'all want to talk more you can find me on Facebook or email me @ jtmorrow1208@hotmail.com

Julissa - posted on 10/22/2012

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Hi there my daughter is pregnant sh is 6 months and was informed by her doctor that her baby is missig femur on both legs, She had a still born last year, she is very scared and well so am i . Did they tell you why this happened or what went wrong, They said they have to do test when the baby is born, i guess were just nervous and don't know what to expect.

Miranda - posted on 05/05/2012

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My 19mo was born without the Fibula in either leg, and her knees and ankles weren't functional. She had a double AK amputation just before her first birthday and is learning to walk with prosthetics

Brandy - posted on 02/05/2011

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hello there! i have an 8yr old daughter who has offd. although she has all her boes her leg is shorter!

Emily - posted on 05/05/2010

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Hi, My son has Bilateral PFFD and Fibular Hemmimelia. He is 4 years old at the moment. I have a blog that I have him on just to keep my family posted about what is going on with him. Go to www.emilyguerra.com and in the upper right hand corner is my information about him.

He is as active as any other four year old can be. Right now he wears two afo's because he has one leg that is about 2.5 inches shorter than the other. He is about as tall as a 2 year old. My daughter who is 20 months is two inches shorter than he is. If you want to talk more contact me through my blog.

Emily

Tracey - posted on 03/23/2010

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Hi Tasha, my son Nat has fibular hemimelia so not the same. I was thinking if you cannot find any information online try yahoo groups, there may be a support group there, or you could start your own. If you start your own, make up A4 signs and place in hospitals and churches telling people how to find the online group and also place it on all of your online sites. Get friends to do the same (including online o/s friends)

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