My wife (Deb) & I were told today that our unborn child has PFFD (due date is May 15, 2008). So far we know it's baby's right femur but don't know the classification yet. This website has been an outstanding source of information & everyone is so friendly + helpful.
We are looking for any advice during the pregnancy. Should we stick with our OB/GYN or seek out a specialist for the birth? When should we begin seeking out orthopedic specialists (before or after birth)? Planning to contact Shriners in Minneapolis but should we wait until the baby is born? Any other advice is appreciated.
We'd like to talk with & possibly meet any other families in Wisconsin that have a child with PFFD. We're unsure what to expect but want to be prepared.
I'm sure we'll have many more questions in the upcoming months. Thanks in advance, Fred-
Comments
Hi
Sorry to hear about your baby. However, I personally am gald that I knew before the baby was born and not at the birth. This way you can do some research before the baby is born. My son if four now and doing great. Your baby will be the biggest joy for you. The good thing about PFFD (if there is one), is that you do not have to do anything for the first year. Their little bones and cartlidge are not formed enough to make any diagnosis until they are around one and start walking. When they start walking is when you will have to see an orthopedic doctor for a shoe lift. Our son walked at 12 months just like every other child. The shoe did not stop him at all. He was climbing up things at 14 months. So all you have to do the first year is sit back and enjoy them. They will reach their milestones at the same time as every other child. It cannot hurt to start calling around to orthopedic doctors, explain the situation, and find out when they usually do the initial consultation. Good Luck - your baby will be even more precious because of this. I know it sounds silly, but it is true.
Looking into the future
Hi,
Congratulations, Is this your first child? do you know if it is a boy or girl?
My son was born with PFFD, we did not know ahead of time that he had a short leg so we did not have the concerns that you are experiencing. I honestly don't know if there is anyone that can tell you ahead of time what to do; I would think you would have to wait until the baby is born to find out what classification of PFFD the baby will have. At that time you will be able to see some doctors.
I don't see much point in changing your ob.
My son Zachery is now 15, (soon to be 16) and he had undergone a number of surgeries. We are hoping he is in the process of the final surgery. We have been with Dr Paley from Sinai hospital from the very beginning. Dr Paley trained under the founder of the Illizarov method, he actaully brought this method to the United States. This doctor is brilliant.
When Zach was born in Australia (I am a native of Australia), he had approximately 1cm for a femur, the doctors in Australia told us that our only option was amputation:-( Luckily for us, we had heard of bone lengthening and pursured this path. As my husband is from the United States we ended up back here in New York, where we did see about six more doctors as well as going to the Shriners hospital in Canada, all of them told us the same thing, Zach was not a canidate for bone lengthening and we would have to do amputation. We could not accept this yet and finally we found a doctor in Boston who told us that he could not do the procedure but if anyone could , then it would be Dr Paley, so we got in touch with him. Dr Paley was very honest and told us that he could perform the surgery and we could do a lengthening but there was no guarantees. Zach had his first surery at 18 months and we were very blessed, the first lengthening was a success. We have stayed with Dr Paley as we trust him completely. This has been a long road; there have been many ups and downs, but to be honest, mostly ups.
I tell you my long story because I believe there are many doctors out there that are still hesitant to recommend bone lengthening, so I urge you to consult a few different doctors before making your final decision.
I am giving you the email address of the Child Life specialist at Sinai hospital, she is absolutely wonderful, has been through all of Zachs' surgeries with us and may be of some more assistance to you. Her name is Marilyn and her email address is
mrich@lifebridgehealth.org
Good luck to you.
Take your time, Fred...
Hi Fred,
My name is Nancy and I grew up just 45 miles south of the WI border in IL. I was born in 1952 and have unilateral right leg pffd. Oddly, I only learned the true nature of my birth anomaly a few years ago. Oh, well!
I had 13 "experimental" reconstructive/modification surgeries as a child that ended up with a fused knee followed by amputation at about 6 inches above my original foot when I was 7 to 8 years old. I'm 5'7" tall and, due to the shortness of my femor, that was about the perfect length to give me a very "long lever" for my stump to manage an above knee prosthesis as an adult.
I'm almost 47 years out from my amputation and still doing well. I've had some back problems, but you have to recognize that when I got my first prosthesis at age 9, I weighed 62 pounds and my WOODEN leg weighed over 13 pounds. I had those wooden legs for the next 20 years, too. Thank goodness for prosthetic research and development.
The very most important thing you can do for your baby is love her and treat her like any other child. Help her be a part of your community and teach other children that she is just like them. See her exactly the same in the bath as you see her wrapped in a blanket. As long as you see her as "beautiful," no matter what her disability looks like, that's how she will see herself.
Take your time! Find professionals who will talk with you and explain options. Don't rush! She won't remember whatever needs to be done till she's at least 3 or 4 years old. She certainly won't remember any pain before those ages. (I certainly don't!) What she will remember is your love!
If I can answer any questions for you, please feel free to contact me, or even if you'd just like to talk... feel free. My folks are both gone now, but the greatest gift they gave me was their unconditional love. They saw me as "just a child," and not as "a disabled child."
Wishing you and your wife a joyous birth and wonderful parenthood!
All my best,
Nancy
Unborn Child...
Dear Fred & Deb,
My wife Karla and I remember well when we received an ultrasound and they first told us about our little girl McKenna's right leg....It was a very scary time back over 10 years ago, and there wasn't hardly any info. available. Thank goodness you found this site!!! We just happen to live in Maple Grove, MN. so if you ever are ready to cross the state line just give us a call at (763)494-8823 and we will be happy to meet with you, and you can also chat with McKenna about the journey she has been on. She is now 10 years old, and has had 2 lengthenings in Baltimore Maryland by Dr. Dror Paley and his staff. That part is going to be a long story, but what we can tell you right off is that there isn't much they can do until your baby is about 1 year old. There is something called "delayed ossification" (spelling?) that is very common in PFFD babies which basically means the bone that is affected hardens at a slow rate. So when they go to take xrays to see what is going on most things don't show up very well until about 1 year after the baby is born, so you do have some time to do some planning on what you might like to do. Just drop us a line at ChuckBerg@msn.com, or call us collect anytime and we will do our best to help.
Chuck, Karla, Dylan & McKenna
unborn diagnosis
Dear Fred and Deb,
It was just over 1 year ago that myy husband and I received the same news, and I know the worry, confusion, and whole bag of emotions you must be feeling. I was 18 weeks pregnant and the ultrasound showed that the left leg's measurements didn't match the right leg. We got sent into Boston for a level 2 ultrasound which confirmed the original and gave us the PFFD diagnosis. The baby had unilateral PFFD in the left leg with fibular hemimelia, meaning she is also missing the fibula in her left leg.
We met with an orthopaedic surgeon before our daughter was born, just to establish a relationship with him and get some background knowledge about this disability. It was very reassuring for us. And I stuck with my OB. She knew me, she had made the original diagnosis, and the PFFD doesn't affect the rest of the pregnancy because there's nothing that can really be done until the baby is born. Plus, she documented the PFFD on every piece of my paper work so that when it came time to deliver, the hospital staff knew what to expect. We didn't want people to "tiptoe" around the issue. When we interviewed pediatricians, we told them up front about the PFFD too.
Jillian arrived three weeks early (I was due May 18th), at the end of April. At one week she saw the orthopaedic surgoen for an xray and preliminary evaluation. In the next few months she also had and ultrasound and an MRI - all to determine how stable the hip was and how the femur was sitting in the socket.
At 13 weeks old Jillian was put in a Spica cast for 6 weeks to strengthen the hip and help the shortened femur sit better in the socket. There really wasn't a big problem with the hip, but it did have that delayed ossification that can happen - just meaning the bones take a little longer to completely ossify. After the 6 weeks, she had the cast off and the surgeon was ecstatic about how good everything looks on that side now. The only thing is that because of the missing fibula, her left foot is rotated outwards a bit. The cast helped to straighten it, so now she wears a small plastic AFO boot to help keep it from moving back to its original position.
She will be 9 months old next week, and she is doing wonderful! She ate, slept, rolled, sat up and babbled just like any typical baby. She's even beginning to try crawling.
We don't know what the next step will be, but for us, one step at a time has been the best and easiest way for us to handle all of this.
I wish you strength and lots of luck. Please feel free to email me if I can help you with anything.
Celine
Unborn Child
Hi Fred and Deb,
Boy...can I remember! I'll never forget the day of the ultrasound where I learned that my daughter would be born w/pffd. Shock...disbelief...fear...I felt sucker-punched. I didn't know how I would react to her when she was born. But, you know what....as soon as I laid my eye on her, I realized she was perfect and the most beautiful baby in the world. My heart melted as I held that sweet little baby. Yours will, too. Once Sami was born, I realized, despite the pffd, she's perfect and I wouldn't change a thing about her.
The tricky thing about pffd, though, is it's all different. Each child is unique. Therefore, it's probably a good idea to wait to see Shriners. Contacting them wouldn't be a bad idea...they may have stuff for you to read, or paper work you can get ahead start on.
Sami wears a prosthetic, does gymnastics and chases around her big brothers. In other words...she's a typical 3 yr. old. Others on this site have gone through lenghtening and others amputation, and others rotation. Every family decides whats best for their child out of love...so you can't make the wrong decision. That always helped me (I had this fear that I would screw my daughter up by making the wrong choice.
ENJOY you daughter...you have time. You guys won't have to "do" anything for awhile...so just love her. That's what all babies need.
Also...Sami inspired me to write a book about the ABILITY of children w/limb differences. A few of the kids on this site are in the book. The book is entitled "Imagine...Amazing Me" Email me privatly if you would like to order one: or visit the publisher at halopublishing dot com!
Good luck! You found a GREAT site...it's help me and my family sooo much!!
Libbi
You Are A True Gift To Me!
Hi Libbi!! I am very new to the site so please bare with me. On November 19 I gave birth to a beautiful baby boy. Shortly after he was born the doctors told us something was wrong and needed to do several x-rays. The next day we discovered he has pffd of the left leg. Everyone around here was confused and made my husband and I very scared. Finally, 3 1/2 months later a doctor directed us to Shriners Hospital in Chicago and that was the best experience ever. I am writting you because we also have a set of twin girls that are seven and they are very scared for my son and we are very unsure how to explain everything to them when we don't know much ourselves. I discovered your book and just recieved it in the mail last week and all I could do was cry. Your book helped explain everything to them and gave myself a much better outlook. My son looks just like your daughter and that makes me feel awesome that he is not alone.....we are not alone. Thank you so much, you are a true gift!!
Rose
Very similar situation!
Wow, we are in a VERY similar situation. My husband Charles and I found out on January 3rd that our unborn child has PFFD of the right femur (due date is May 20th, 2008).
We did visit the local Shriners hospital (we live near Albany, NY and went to the Shriners in Springfield, MA). Our baby boy has his own chart at Shriners and my husband and I spoke with a terrific genetic counselor, who helped us understand that PFFD is not genetic and that from our ultrasound reports the abnormality appears to be isolated to a short right femur.
We have decided to transfer our OB care to a high risk specialty office and will be delivering at a more advanced hospital than the one we were at before learning of the PFFD. This decision was appropriate for us and we are very happy with our new office. (Not to mention our previous office, mentioned twice about termination when they delivered the news about the short femur on the ultrasound, which sent us into complete shock and made me feel that there had to be something else wrong. We got a second opinion at our current office and got a transfer of care to the high risk OB team.)
We also spoke with a pediatric orthopedic specialist who was very supportive and answered a lot of our questions that we had. He said our next concern is the hip. We may do a fetal MRI to assess the hip and see how it is forming. This will help in determining the classification of the pffd. He also mentioned the doctors in Baltimore Maryland at the Rubin Institute, Dr. Paley and Dr. Herzenberg, who have basically pioneered the leg lengthening procedure. He said if the classification of the pffd is an A or B then the leg lengthening procedure was very successful and can be done at an early age (4-6yrs) and again at a more bone mature age (11-14yrs). Although I know every person and case is different and it is hard to generalize treatment for our unborn children, however this information really gives me hope in the medical advances of bone lengthening and treatment for pffd.
This has been our experience so far, we have found that visiting Shriners and the pediatric orthopedic specialist (who is familiar with pffd), has been helpful to us. I will continue to be monitored via ultrasound and may have the fetal MRI to determine the hip growth. Otherwise we will patiently await our little one and find out more once he is here.
I would love to keep in touch with you and hear how your journey is going as well, this is my first pregnancy and I am very consumed with making sure my baby comes into this world with everything that I can offer him.
It is such a coincidence that we both are due around the same time and found out at our 20 week ultrasound of this very rare condition of pffd.
Best of luck and our prayers are with you,
Shawna and Charles
I was with the shrine for 21
I was with the shrine for 21 years. I have been to mlps more times then
I can count. I have a PFFD left leg and am a male 34 yrs. I had a few operations in Minnesota I used a straight leg most my life. I did enter a blog in here once didn't see too many replies so have not been back. I am in the Waterloo/Cedar Falls IA area and am now having many hip/back and leg problems due to my PFFD. I hope you get to read this and I will look back to see in the future. If you want to know more write to me I just don't want to get too far yet. I am looking for information on building some Mission Furniture. I am not too knowledgeable on blogs so I hope I have done this correct. I also wrote the little blurb in the recent posts (new to site with back problems) Hope to here from you.. if not good luck in the future.
hip/back problems
i hear ya on those hip/back problems. i'm 31 yrs with bilateral pffd and the hips are really starting to hurt. i've found that professional massage helps a little.
it'll be OK
i'm 31 yrs old with bilateral pffd. i have have 2 children of my own. the best thing my parents did was they didn't treat me any differently and they didn't focus too much on it. i went to the shriners hospital and they were awesome. the shriners hospital in tampa, florida has a book on PFFD- i actually did the illustrations. your baby will be beautiful. and this will only make that child stronger. honestly, i wouldn't change a thing. i'm glad i was born the way i am (although i could do without the curly hair). being born with pffd taught me to be strong and actually, over confident. i feel like i empathize better with people because of it and it's helped me become who i am today. i was born special. that's how my parents described it to me and i believe i was born this way for a reason.
It's OK!
I had the same situation with my Emmaly. She is now 6 months old, and she's beautiful, wonderful, and hitting every normal milestone for her age, and exceling in some.
I'm worried about future problems, but for now, everything is OK! And, no matter what, I have a beautiful daughter that is loving and loved!