We are new to this website and to the realization of PFFD.
We first got the news at my 26 week ultrasound that the right femur was short. Neither my perinatologist nor my ob had ever seen this before. Our pediatrician had and so we knew all along we would go to Scottish Rite after the birth of our miracle. Our beautiful daughter was born April 11 with a noticeably short femur. We went for our first appt in May and we go back in August. I would love to visit with any families who have had similar experiences. Assuming the discrepancy stays as significant as it is now, limb lengthening will probably not be an option. If you have had similar discussions with doctors, please let me know. We are also wondering if we should get a second opinion. If so, what hospitals do you recommend? Seems like the Hospital for Special Surgery in New York has a good reputation. Thank you!
We would love to help!!
We too were told at our ultrasound that our little girl McKenna had either a missing thigh bone, or a very short one. It made the last weeks up to the delivery very, very stressful. Also at that visit they decided to show us a book showing all kinds of various birth defects that we may need to be prepared for. Then once our little miracle was finally born, (exactly on her older brother's birthday might I add), we were imediately separated while they raced McKenna to the childrens hospital next door to make sure there weren't any other complications. After that flurry of activity was over we finally were given a name for what McKenna had, and we started down the path that we chose. Which leads us to today, July 8th, one day after McKenna's 11th birthday party!!!
We do have a very long story to tell, but to save time, (and my fingers from typing cramps), we would like to offer you 2 things. First our email address and phone number which is chuckberg@msn.com, and you can also call us collect anytime at (763)494-8823 and we would love to chat and answer any questions you might have. We also have made a DVD that we ship out to anyone who would like to see them for free that we made that shows McKenna's progress from before her first surgery to just after her last one. If you would like a copy of it just send us an email with the address you would like it shipped to and we will get that out right away. Feel free to ask for additional copies if you need them, and share them with your friends and family so they can have some insight into what you may be looking to do.
We were lucky enough to have someone post on the original PFFD website which 10 years ago was the only place to get in touch with other families, and we are very, very greatful to Rar for all of his efforts for getting this new site up that has been extremely helpful to everyone in the PFFD comunity. We are just doing our part to help like the families did back when we started out. When you are ready just let us know what we can do to help, and we will share all the info. we can. Good luck, & God Bless!!!
Sincerely,
Chuck, Karla, Dylan & McKenna
april 2008 baby girl
I live in Queensland Australia so visiting is out of the question, but if there is anything I can do to help I am only too happy.
My daughter Cobi who is now 19 sounds like her PFFD is similar to your daughters. We had no idea she had PFFD until she was born. Her femur was also noticeably short and looked like a little triangle on her x rays. There was no way they were going to be able to lengthen that tiny piece of bone. All that stuck out of her (cloth) nappy on her right side was really only her foot. Cobi got her first prosthesis at 9 months and was walking perfectly at 15 months. ( Her 2 older brothers both didn't walk until 14/15 months) so she was no different. I have kept her first prosthesis which is so small and cute. By the time she was 4 years old her right ankle was almost level to her left knee. 19 years ago we had the choice to leave her leg as it was, amputate her foot so she looked like an amputee or have the Van Ness Procedure. Up to this stage her prosthesis had no bend and her foot stuck out the front. The older she got the more her foot would stick out and not only did it look strange it would interfere with her wearing certain clothes such as long pants; amputation was out of the question. I would kiss her "little" foot everyday and there was no way that it was not going to remain a part of her; so at the age of 4 Cobi had the Van Ness Procedure and we haven't looked back. A wonderful surgeon in Melbourne performed it as he had done many all over the world. Sometimes the foot can rotate back but Cobi's never has. She was so excited to have a "bending" leg. Cobi's "little foot" which of course is now back to front points down so well that it is totally enclosed in her prosthesis. She just looks like a below knee amputee. Being a girl I think cosmetically it needs to look as normal as possible. I could tell you many many stories but if you like you can email me on catherinejones61@hotmail.com if you want to talk further.
Cobi is amazing. She has never once said "its not fair" or complained about having PFFD. I have raised her no differently then her 3 brothers and as a result her disability has never been an issue or got in the way of her doing anything. She has played abled body sport to rep team level and even bare-foot water ski-ed on one leg (that made me cry). Six years ago she was introduced to disabled sports which she turn her nose up to. However she was soon hooked on wheelchair basketball. Since then she has travelled the world representing Australia in this sport and has just been selected for the Paralympic Games in Beijing in September.
There are very few PFFD children in Australia and when Cobi was growing up we had no-one to talk to about it except doctors who don't know about the ups and downs and how it feels to be a teenage girl with one leg. I think this website is great and I hope that being a mother of a special girl 19 years down the track from your special little girl may be helpful to you no matter what path you decide for your daughter.
I have an April 2008 Baby with PFFD too
Hi,
I have a baby girl born on April 10th, 2008 with PFFD. She also has FH (missing fibula), hip dysplasia, a short and bowed tibia and is missing a toe (all on her right side only). Right now she is wearing a brace to help her hip go back into the socket. We won't know what can be done with the leg until the hip is fixed. The doctor has said that he predicts the right limb will be 15 cm shorter than the left leg once she is fully grown. The Dr. also has talked about limb lengthening when she is five years old. We see a Dr. at the local Children's hospital, however I would like to get a second opinion in the near future, perhaps at a Shriner's hospital.
Best of luck to you. It is going to be a bumpy ride but our little ones are so worth it!
Natalie
April babies
Wow! Our babies are 1 day apart. That is special. I would love to correspond with you more when you have time. jenniferbethscott@hotmail.com. Thank you!
Jennifer Scott
Mom of a beautiful redhead
October 2007 Baby Girl
Our daughter has unilateral class A PFFD of the right femur. They noticed a short femur at my 20 week ultrasound, but didn't think of diagnosing anything. When she was born, the difference was obvious if you were looking, but not overly if you were just admiring a cute baby! They did ultrasounds, and said her hip and everything else seemed fine. As of our last appointment, she had an approximately 2 cm difference of femur lengths, but it looked like her hip and top of her femur were developing fine. We'll find out more in September when we go to the Children's hospital in Seattle. The doctors here in Alaska have never seen it before, and don't know much about it. I'm curious about what your doctors told you when she was only a month old? We didn't even get a diagnosis until she was over 3 months old. And even then, they just told us to look it up online, and to keep an eye on her to make sure everything else was developing fine. Anyway, we're looking forward to getting more information!
Good luck to you in August!
-Rachael & Emmaly
Hi Rachael and Emmaly, They
Hi Rachael and Emmaly,
They didn't tell us a whole lot, couldn't see much on xrays. And we went for her follow up today (4 months) and the doc said you can't see much more than we did 3 months ago. But we have been really pleased with the information we have been given as we travel this journey. Thank you for your support.
Jennifer Scott
Mom of a beautiful redhead
April 2008 baby girl
Kindness is the oil that takes the friction out of life.
My granddoughter is now 6 years old. Dr. Paley and Dr. Hergnberg has been with her from the time she was two years old. Dr. Paley has done her surgery. I am 67 years old and never had a hero t'ill I meet these dr. To me they are the best My granddoughter will be up there on Monday the 28, of July 2008. God Bless Sybil Ginn Mallori's grandmother [meme]
surgery
I am all about following my gut instincts and second opinions. Getting a second opinion is not an insult but your way of actively advocating for your little girl. We have had 12 opinions!!! I gather as much info as I can and if I am not confortable with the physician or the game plan that they set forth I call someone else. I have finally ended up with a wonderful doctor on new hampshire at Dartmouth childrens Hospital ( Dr. Kathleen Mohen) She listens to my ideas and doesn't force us into radical desicions as some other md's did. We were told when my daughter was born that she would never walk, crawl, or run and that the only option for her was a radical amputation. They had never seen a case like this nor heard of pffd. I didn't even know that Kayla had a problem untill the day she was born. She was born at 7:42 am and thay wouldn't let me see her until 9:38 pm because of the battery of x-rays, ultrasounds and mri's that they were doing. No one would tell me anything other than she was breathing and had ten fingers and ten toes. When they finally did bring her to me and started explaing that they had thought she broke her femur in utero but saw no evidence of old fracture or breaks I about lost my mind. I felt so alone and pushed into a corner. I thought I was the only one in the world who was going through this. Among this and thoughts of self blame I broke down and had a two month crying spell, multiple calls to physicians around the country and many let downs later I got myself together for a long battle. I was not in the medical community at that point I was only waitressing to get by. I was told that Kayla would never crawl walk or run and had to get an amputation soon so that she would not miss her leg when she got older. For two years people kept trying to force me into a decision that I wasn't ready to make. I moved back home (vermont- we were in Indiana) and after a couple more bad md visits and finally finding someone we trusted not only did I find that I had done the right thing in waiting but that Kaylas leg was really growing and the prognosis was not as bad as what all the other docs thought it was. I am so glad that I did the foot work. It is a long road in front of you guys but just know that as her advocate you are going to do the right thing at the right time. You will just know becasue it will fit and feel right!!!
Let me know if you have any questions I would be glad to help!!!
kaylas proud mommy- Tara
Thank you
Many thanks to all who have responded to my email. I am sorry I haven't had the time to write back. Please know that I have read them all and we are so thankful for your advice and support. I would love to correspond with all of you by email: jenniferbethscott@hotmail.com. If you have a chance, drop me a note. I can update you about sweet little Abby and her appointments at Scottish Rite.
Jennifer Scott
Mom of a beautiful redhead
Daughter with PFFD
I haven't been on this site in a while but was looking today and saw your blog. We too found out at my 25 week ultrasound that our daughter's left femur was short. We did not get a name for it untill she was a month old and we had our first visit to Scottish Rite Hospital. What Scottish Rite Hospital are you going to? We are at Texas Scottish Rite in Dallas, Tx. They are great!! Aubrey is now 2 and doing great. She got her first prosthesis at 14 months and started walking at 18 months with her prosthesis. A few months after that she started walking without her prosthesis. She climbs and goes everywhere with and without her "leg"(That's what she calls her prosthesis). The Dr. at Scottish Rite has said that lengthening probably is not an option but we are waitng on her hip to ossify so we can see how it is formed. We do plan to get a second opinion, but are waiting because we've decided there is no rush and we want her to have a say on what happens with her life. I'd love to here more from you and answer any questions you have.
N Coco