Noah, our son, is just over 2 months old and has been diagnosed with PFFD and fibular hemimelia. My husband and I were terrified to find out something was wrong with him the day he was born. After the appointment with the orthopedic, David and I are optimistic that Noah will be able to live a "normal" life. We have joined the site in hopes to connect with other families dealing with PFFD.
After speaking with the doctors it seems they believe the best treatment option for Noah is VarNess rotation or Symes Amputation. As daunting as both options seemed at first we are just researching our hearts out to make the best decision for our family. We would like the route of treatment we take provide Noah with the ability to play as any child would and be the best treatment for him in the long run. We are looking for any advice and appreciate any help anyone may offer.
We are so happy to have found this site and are looking forward to learning more about our sons condition.
Noah's Mom & Dad, The Robbins
Comments
your new son
I hope your feeling more at peace now. My daughter was born 8 months ago with Bilateral PFFD, and complete absence of both her arms. I found GREAT support here, and on Facebook. There are a couple of Facebook Groups to look for aswell. An ANgel With No Wings, and PFFD support group. We are so lucky that our babies were born in this day and age. Sooooo much is available now!!
Rachel
6 month old daughter with PFFD/FH
My daughter was born in April 2008 and has PFFD/FH (fibular hemimelia) in her right leg. I found out while I was pregnant at my 28 week ultrasound that her fibula was completely absent and the rest of the bones in her leg were small. It must have been hard to find out the news after your son was born. I'm glad that you are optimistic after meeting with the orthopedic surgeon. We have met with three doctors and they all recommend limb lengthening. However, we would like some additional opinions to make sure that she will have the best quality of life possible.
Good luck to you in your journey.
Natalie
Hi, I am a mom with a nine
Hi, I am a mom with a nine years old son with unilatera PFFD. He is using an artificial leg prosthetics on his short left leg. You know its better for your son Noah to let him check by a doctor, and choose what is best for him. The doctor knows better. I am guilty about my son because its too late for him for correction in his body. A lot of expenses will be needed for him now, because his too old and many deformities happened to him. He had an unstable hip too. For me its better to let him done what is best for him and do what the doctor told you. Thank you.
hello
louise kavanagh here just wondering if you wouldnt mind me asking is it a straight prosthestic your son is wearing and how does he and did he manage with it. My daughter has just got a prosthestic leg.
Hey
Hey and I cant imagion what you feel not know what to think about your son. However I want to encourage you that he can and will live a wonderful life. I have bilteral Pffd and I am now 39 married for 16 years two children of my own and 4 foster children. Just push him to be himself and let him try anything he wants. I would love to see pictures of him I bet he is cute as a button. I know my mom and dad were scared when they had me too but soon found out that I could do anything I wanted just maybe had to do it a little different. Well hope to keep in touch......
My son Turner has both PFFD
My son Turner has both PFFD and FH in his left leg, we too did not know until his birth and we were completely unprepared for it. Now 5 years later we are all learning a bit more every day and he has totally amazed everyone we meet with his strenght and abilities.
At 8 months old he had a symes amputation at Shriners in Tampa, last year we had a total knee fusion with growth plate distruction to slow his leg development. He was walking with his prostetic by 14 months and now plays baseball and soccer. Most people never notice his condition until he wears shorts or runs. His doctor says that with time and sport prostetics even his running will be the same as other kids. Every day he teaches me something new.
If you ever need to talk you can reach me tkeck@verizon.net, Turner loves hearing that he is not the only one out there.