anyone out there

hi my name is amanda and my 6 month old daughter pheobe has pffd in her left leg so im new at this whole thing and still in the first stage of everything. as a mom i am having trouble with blaming myself (even though her dr at vanderbilt childrens hospitol said not to) i would just like to talk with other moms or others with the conditions about the whole thing. i guess i just need a little support. so far my fiance is doing pretty good with the whole thing and i was doing great but we went to see dr martis (her specialist) on friday and he told us that she does not have a hip socket so that kinda set me back again. we are considering going to talk to the shriners also and see what they say our options are. so nyone that wants to talk just write back. thanks a bunch

Hi

Let me start by saying as a mom dont blame yourself for this it was God giving you a precious gift. I have this condition also and I love my parents for being so strong and encouraging me to do the things that the doctors said I would never do. I have no knees or thign bones and they (DR) said I would never walk or have children and I would be in a wheelchair all my life. I do anything I want. I have two wonderful children who are ours and three that we foster I also drive and have a wonderful husband who loves me with all his heart. I wouldn't want to change my life for anyone. I have my parents to thank for this...they were always there for me and loved me and I knew that God has his reason that I may never know but He only gives the babies and children to special parents who He knows can handle it. So stop blaming yourself and look at it as a way to be stronger and your life will touch someone elses. You are more than welcome to e-mail me anytime you want to talk....I am 39 years old and would answer any question you have if I can...
Barbara

littlebitedavis@yahoo.com
I am also on facebook.com

48 yr old pffd with no surgery

Hi All: I am 48 years old and have had no surgeries. I find it increasingly difficult to find a prosthetic maker who can make a prosthesis for me and as I get older I am having alot of back problems due to my knees being about 5" off. I am beginning to think about amputation for the first time because I hope to be able to more physically active again and lessen my back pain.
Are there any adults who amputated after the age of 40? Anyone else have no surgery and have you found someone who makes great prosthesis for pffd's? Thanks in advance.
I can be reached at kflammia@aol.com. or here.

Son with PFFD in left leg

Hi Amanda.
My son is 4 months old and has PFFD and Fibular hemimelia in his left leg. I'm also engaged to be married and have also done the blame game... I also feel like if I could pin point what the cause of this condition is I could cope with my sons condition better. I'm sure you have heard it before but theres no reason to blame yourself and your daughter needs her mom to be strong. The best way to stay strong is to talk about it with others who are going through the same thing, so if you want to talk I'm always available.
My email is ldmoynihan@gmail.com or you can message me through the PFFD.org website.
Goodluck to you and your family
Lori, David, Noah

pffd

Hello all, my daughter also has pffd, at the same time the leg is missing just above her knee. I to am having a hard time dealing with it. I want to know what I did to cause this. We were told at first that Kayla had ABS(amniotic band syndrome) but after the MRI they said that it was pffd. I would love to talk to other about how they are doing.

yea i told the dr that i

yea i told the dr that i would like to know what happened to cause her to have this because i think it would make it easier on me to not blame myself, but the only thing he has told us was that they think it might me a vitamin deficiency but they dont know yet. it makes it a little easier to tlak to other people going through the same thing that i am. its nice to know that your not the only one out there going through all of this. but i would be glad to talk.

Hi Amanda, I'm Jamie. I have

Hi Amanda, I'm Jamie. I have a one month old daughter, Lilliana, who was born with pffd in her left leg. Her left leg is 2.5 inches shorter than the right. I know she has a hip socket, it is shallow and she will probably need a brace, but we are not sure if she has a knee or an ACL. I too am having trouble blaming myself. My husband seems to be doing much better than I am with the whole thing. We have only seen our Pediatric Ortho once and it was back in the hospital the day she was born. We have an appointment in 3 weeks for a repeat ultrasound and to discuss her options as far as treatment. He told us he has only seen this 4 times in 10 years and that nothing can really be done until she in 2 or 3 years old, he mentioned sending her to CHOP. I'm just wondering at what point I need to get her to someone who has more of an idea of what this is, I don't want to wait too long. There is a Shriner's hospital in Philly and I will probably take her there in the near future for a second opinion. Anyways, keep in touch, I would love to chat with someone who is going through the same thing.

its good to talk to someone

its good to talk to someone who is having the same thing going on. my fiance is handling this whole thing a lot better than i am also. as far as when to go to someone else for a second opinion pheobe is 6 months old now and her ortho that we went to see just last friday, told us when he found out that there was no hip socket that the option of lengthening was outta the picture, and said that with her not having a hip socket that they would have to do surgery on her to build her a shelf so now that he has told us this we are getting the paperwork filled out to go to the shriners. now that we definately know a little bit as to whats going on we want another opinion. but i am having a lot of trouble blaming myself because they cant seem to give me reason why it happens, i think if they could figure that out it would make it easier for me. but i hpoe to keep talkin and good luck with your daughter.

2nd opinion and timing

I was just reading your stories.....my heart is empathizing with you. Just remember...this is not a life threatening condition and you can proceed with the medical side when you are ready. Just focus on loving your baby and being a mom for now....this time passes too quickly.

I strongly recomend as many opinions are you need to know that you are making the best decision. Get 2nd or even 3rd opinions, if this is what you need. As an adult with pffd and multiple other disabilities, I can promise you that you are raising a child who can excel at whatever their heart desires!

yea right now we are going to

yea right now we are going to vanderbilt in nashville but i just sent in the paperwork to the shriners and me and my fiance would also like to follow dr paley and find out where he is going to so we can get his opinion also. but i do think a lot about her future like will she ever find someone to except her for who she is, will she be able to do whatever she wants do to?, and will she be willing to tell or show the person she is with, or will she be secretive or have a bad experience showing someone she falls in love with, you know? i think a lot about that kind of stuff, i know there are a lot of cruel people out there and you just never know.

Cruel people

I am happy to say that in my 35 years, I have only met 5 "cruel people". However, I have met countless wonderful people. It is easy to dismiss the damaged cruel people.

You will set the example for how your daughter will embrace or hide her leg. If you tell her not to wear clothes were it will show, then she will hide it. If you realize that some clothes like swim suits are a part of life, then it will all seem typical.....just like having bad cellulite or a strange birthmark. It will be a part of what makes your child who they become, but no more so than hair color or cuteness. PFFD is more of a trait than a disability. It does not affect cognition (brains), self help (we all drive, dress and feed ourselves) and it is a stable condition.

BTW- The only known genetic cause is linked to diabetic mothers. This is a very small percent. The rest of the cases are sporatic and linked to amniotic banding, and the unknown. As a person with PFFD, I'm okay with it just being an unknown. It only concerned me when I had my two kids, but they are fine.

Love to talk

Hey Amanda,
I would love to talk. I also have a 8 month old daughter with unilateral PFFD in her left leg and it looks like she also does not have a hip socket. My e-mail address is Lisa@Acquistogroup.com . I am looking forward to hearing from you.

Here for anyone who needs support

My name is Samantha and I was born with PFFD. I am now 25 and went through the leg lengthening process. I had a total of 4 surgeries performed at Children's hospital in LA. There is hope for you and your children out there. I had an amazing and wonderful childhood and despite the scars, I have 2 perfect legs! And to those parents who feel guilt, my parents went through the same thing. I was born in '83 and at the time the only place PFFD was seen was in England and caused by handling some sort of illegal drug. Sometimes these things just happen but I am a better person because of it. Nothing is your fault...

You can email me at sammhendrickson@gmail.com if you want more information or photos. Also, you can find a lot of young adults that have gone through both amputation and lengthening on myspace. There is a PFFD support group. I think for some it may be helpful to see photos or read stories of people who have gone through this and grow up to be healthy normal adults.

Cheers & Happy New Year,
Samantha

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