I gave birth to a 7.5 lb. baby boy on 8-22-06. We had made it to each of our prenatal appointments and we did not suspect any thing was wrong. I had five ultrasounds to determine the location of the placenta, determine due date etc. Our doctors never found the abnormality. When our baby arrived we were shocked that there was something wrong. Our doctor had no idea what the condition could be and thats what he told us. So Josh and I sat for the next five hours with our first child, confused and scared. At 11:00 that night our doctor called us on the phone in our hospital room to report his findings via the internet. He said he thought it was Pffd, he mentioned amputation as a course of treatment. We were partially relived to have a name for our son's condition but also terrified of what our baby would have to go through. We have gone to Shriner's Hospital in Sacramento to see Dr. Rabb. He explained the basics and possible treatment, then directed us to research the condition on the internet so that we could decide which course of action we felt most comfortable with. So here I am, my son is two months old, he has unilateral pffd and does not appear to have a hip joint. I love him so much and find my self forgetting about the condition most of the day, but then it hits me, We have a big journey ahead of us and I feel so helpless. I know there are others who have been through this and I need some guidence right now. --Kathy
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Your son
Hi Kathy,
I was in your shoes almost one year ago. My beautiful baby girl was born November 8, 2005 and we thought everything would be perfect. A couple of hours after she was born the nurse noticed that her right leg was shorter than her left. Noone knew what this was. We found out she had Pffd one week after she was born. It was the worst time in my life. I was so sad and worried and just didn't know where to turn for help and guidance. After a year, I have to tell you that it does get better! Your son will hit every "milestone" and will amaze you! We were originally told amputation would be an option also. We went to a couple of different doctors who had suggested lengthening or amputation. We finally went to Dr. Paley in Baltimore who only suggested lengthening. The best advice I can give you is to do all the research you possibly can. Whether amputation is what you choose or lengthening or anything else just do all the research you can - that way you know you are doing the best thing available for your son. With PFFD, each case is so different. And just remember that your son will adapt to whatever it is and that this will not define who he is. Dr Paley said something to us that replays in my head every time I have a bad moment. He said: "If she is going to be an athlete, this won't stop her, if she is going to be a couch potato this also won't stop her. She will evolve and develop the same way she would have had she been born with two legs of the same length." So, just hang in there. It will all be OK!!! If you ever want to talk, feel free to email me at mcd3@myway.com and we can exchange phone numbers.
Maria