Emma was born in 1996 and is coming up13 years old. She has a twin brother Zac. Emma has PFFD in her left leg and we found out about her condition at the first scan at 15 weeks.
Emma has had no surgeries and wears an extension prosthesis. We met often with a number of specialists during the first 6 years of her life, including Ian Torrode in Melbourne (Van Ness Rotation), Dror Paley USA (lengthening) via letters/xrays from our orthopaedic surgeon in New Zealand who had worked with Dr Paley in the US.
We decided to do nothing, as lengthening was not an option for Emma due to the extent of her condition and the fact that we did not live in the US close to Dr Paley who did say that he would have taken her case on. We moved to Singapore over 4 years ago now, and when we went back to NZ last Xmas we met again with the orthopaedic surgeon who had consulted with (and had previously worked with) Dr Paley, and he said that what we had decided to do with Emma, was in his opinion the best thing, and what he would have done if he were her parent.
Emma is going to get her first high heel prosthesis in the new year and is looking forward to that.
She goes to a local Singapore primary school, rides horses, is a sailor and is climbing Mt Kinabalu (the highest mountain in South East Asia) next March with her fellow student leaders.
She has played netball, been a chair leader, done gymnastics, and she roller blades with her prosthesis. She is also a good swimmer.
Singapore is hosting the inaugural Youth Olympic Games in 2010 and she is hoping to compete. Her long term goal is to sail for Singapore in the Paralympics.
She is growing into an amazing young lady and our decision to get her a prosthesis that she can easily use, get on and off quickly and keep her body intact (i.e no amputation) was absolutely the right decision for us. It also has allowed her to live a 'normal' life even as we adjusted to life while moving countries.
With lengthening out of the question, then we reasoned that 'all' she needed was a prosthesis. Whether her foot was on or off (amputation) or backwards or forwards (van ness rotation) didn't make any difference to us ... bottom line was that she needed a prosthesis so we decided to leave her in one piece and just get her a prosthesis. It has worked very well.
She does have some leg pain (mostly behind the knee) and takes panadol about once a fortnight to help her. If anyone has any ideas about pain or pain control comments and suggestions would be great to hear how you have coped with leg pain.
If there is any other 12 year old girls out there with PFFD, I know that Emma would like to hear from you.
Dione Schick
Emma's mum.
Comments
hi
hey!,, i read this blog a few times and you and your familys life seems pretty interesting , moving to diffrent countries and probably experiencing diffrent cultures as well, i also read that emma perhaps would like a penpal??,, im not exactly 12 but 18 years old and i have pffd as well,,, if she ever wants to write or ask questions i would be more than happy to have a penpal as well=]
Hi
Hey Heiata
Thanks so much for your reply, and sorry it has taken me so long to realise there was a posting! I will pass on your kind offer to Emma tomorrow (she is asleep at the moment!).
Do you wear an extension prosthesis as well? How has it been for you? And what country are you living? (Sorry about all the questions!).
Look forward to hearing from you again.
Kind regards to you
Dione
HELLO FROM EXPERIENCE
Im 12, almost 13 and i had the limb lentghening surgery done 2 months ago tommorow. I had my right femur lentghened and it was and still is very very painful, however through that time I have learned ways to make it easier. 1. Buy a heating pad,this helps to calmly relax the bone and relieve pain. 2. never touch the pins, a simple tap could hurt for a long time. 3. when the gauze, which is wrapped around the pins is taken off, it may stick to a spot on your leg, wet it dont pull it,then a slight movement will make it fall off. 4. dont be shocked when you get your walker, no matter how hard you try you will need it. 5. you should always listen to your physical therapist,even if it sounds crazy. HOPE THIS HELPS,FROM THE EXPERIENCE
your experience
Is this your first lengthening? If not, how does this lengthening compare to previous ones now that you are almost 13? Do you have trouble sleeping because of the pain or because you can't get comfortable? Do you have pain all the time or just when you tap the fixator? Have you had a pin infection? Do pin infections hurt or just look wierd?
I apologize if these questions are too personal. My daughter (age 5) is going through lengthening right now and it is hard for her to put into words these kinds of things.
Thanks.
Beth
bethreinert@yahoo.com
REPLY FROM EXPERIENCE
Sorry about being late with a reply but i found out that we can take this thing off soon so i got excited. For your questions, here are the answers. This is my first time lentghening however from other stories i heard it is easier when youve had it before. It is not easy to sleep because of both pain and uncomfort only because mine is on the side of my leg. As for the pain, it hurts all the time if you dont have something helping it such as a heating pad which you can buy at cvs. I have had a pin infection and they do hurt. If you see any green coming out of the pins or a very bad smell call the doctor and he will advise to either come to the hospital or go to the emergency room. If you can answer my questions i can help a little more.
Where is the device? Is it on the top or side of her leg? How long has she had this on? Do you know if she will need this again?
Good luck, from the experience
your experience
Thanks!
This round, the fixator in on my daughter's inner lower leg. She has had it on since April 23 of this year and it will hopefully come off in late September. She will likely need 2 or 3 more lengthenings over the years.
Thanks again!
Beth
GOOD LUCK FROM EXPERIENCE
Tommorow i will find out when we can take this thing out so ive been kind of busy and the internet was down for a few days but now i have a question for you. School is coming soon and i was wondering if she is going back to school with this on? If so please tell me because i need a way to go to school without hitting it everywhere?
Thank you
your experience
My daughter will be attending school. At school, she will be able to use her wheelchair and walker. She will also have an aide assigned to her to assist her throughout the day and keep her away from situations where her leg might get hit. Because she will be taking a wheelchair with her to school, she will ride to school on a wheelchair bus. She has a "504 Plan" at school which requires her school to provide an aide, special transportation, and some other things. She will keep the 504 plan until she no longer needs special assistance at school.
Some recommendations for you: You can use a wheelchair to get from class to class. That way your leg will be protected from other people bumping into you in the halls. Get permission to leave class early before the bell rings, so that you can get to your next class or bus before the halls fill up with people. If you are sitting on a bench at lunch, sit on the end of the bench with your affected leg toward the end of the bench. (If your left leg is affected, sit on the left end of the bench with people sitting to the right of you.) That way your leg won't get bumped and you can get out easier.
I hope your appointment goes well! I wish you all the best!
Beth
A penpal idea
Hi Dione,
Have you met/talked with Catherine Jones in Australia? Her daughter is Cobi and she's 19 year old paralympian in wheelchair basketball. I met her through this website and we hope to meet in the US one of these days. So much of your story reminded me of Cobi -- she had the Van Ness when she was 4 1/2 years old, I believe. Anyway, check out her blog on this website. I have her email address if you would like to email me at jenniferbethscott@hotmail.com.
A penpal idea
Hi Jennifer
Thanks for your reply, and no I haven't met/talked with Cobi or Catherine Jones. I will take a look at the blog thanks.
Kind regards
Dione
Hi
I am 27 years old and I have PFFD and my left leg is amputated. I just wanted to tell your daughter that she has given me hope at my age of 27. I have always wanted to do all the things that your daughter is doing and even though I dont know her I wanted to let you all know that I am proud of her and to keep going strong.
Your friend
Shaunta
Hi
Hi Shaunta
I will show your message of support to Emma (I have only realised late tonight that your message is here), thank you so much for your words of encouragement. I would love to hear more about your amputation and it's impact on what you have and haven't been able to do? You would have been 14 when Emma was born, about the same age as she is right now (she is 13). How has it been for you?
Kind regarda
Dione
Hip surgery
Hi Dione
I am writing to you from South Africa. Our daughter (see Morgans Story on the site) is now 3 years old and has had her first hip op (pelvic osteotomy) to try and stabilise the hip. She is also a class C or D. The operation was unsuccessful and will be repeated in Feb 2009. Needless to say we are devestated that we will have to through it all again !
Our doctor has mentioned that stabilising the hip is the most important procedure before deciding on further treatment. Lengthening was mentioned but the difference between the legs is fairly substantial and the nature and duration of the lengthening seems daunting ? Amputation is another consideration for us.
Any feedback you can give - especially on the hip will be greatly appreciated.
Best regards
Charles (Morgans dad)
Hip Surgery
Dear Charles
Thanks for your reply, and it is indeed a shame that the surgery wasn't successful first time around. To answer your question and our experience around hip surgery goes a bit like this... when Emma was born and we met up with the specialists, it was made quite clear to us at that time that Emma would begin surgery at about age 2. There was talk of hip stabilisation, and also rotating the leg as the hip it is slightly outward facing. There was also talk of leg lengthening starting at around the same time.
It took a long time to determine if she actually had a hip ball joint, and hip socket. The latest opinion is that she probably doesn't, and her femur is held in place by ligaments rather than a ball securely in a socket.
So as the time wore on, we were expecting surgey to stabilise the hip and do some 'soft tissue release'. Over time however, and with each 6-monthly visit to the specialist it was always delayed. What finally became apparent at about age 4 or 5 was that the specialist didn't really know what was the best thing to do. Added to this was that he was nearing retirement and didn't really want to take on such a complicated case with no clear direction for treatment. When we finally pulled our hair in frustration of 'what's the hold up' it was generally agreed that nothing much would be gained from surgery as leg lengthening wasn't really an option for Emma. Our second opinion (the surgeon who had worked with Dror Paley in the US who had sinced moved back to NZ) agreed. So each year or so after that we checked that this was still the case, and yes it is. We met up with the second doctor just about one year ago when we went back to NZ for a visit, and he still maintained that we had done the right things for Emma, and he would have done exactly the same if he were Emma's parent.
We are very, very glad that we didn't amputate (we could never really see the logic of it actually - "all" that is needed is a prosthesis - amputating doesn't change the fact that she still needs a prosthesis, foot on or off, a prosthesis is still needed!), from our own experience we cannot see what is gained from removing a perfectly wonderful, healthy foot. I know that many parents have great things to say about amputation, but we believe it is a decision that Emma should make for herself if she would like to remove her foot (it's mind boggling to think that you would choose to remove your own foot, but I do understand that sometimes it is a choice that is made for cosmetic reasons and fitting reasons). At this stage she says 'leave me alone' thanks very much, I am perfectly fine the way that I am.
So in summary, her hip gives her no problems at all and it never has. Yes, you do need a stable hip and knee joint for lengthening, however lengthening was ruled out by us at about the age of 7. And she hasn't looked back. Emma has a 21cm discrepancy and it's more the hip/knee that was the problem for lengthening (also access to expertise - if we had lived in the states maybe different, maybe not) rather than the length difference.
I must say too, that when visiting the surgeon in NZ about 1 year ago, he mentioned that how 'gung ho' they used to be on the idea of lengthening 10 - 15 years ago when it was new and exciting. He reflected a little on how his approach has changed a little and the impact on the kids lives. He say's (as we all know) that it is a very hard decision what to do, but these days he would tend to be less 'gung ho' ... he thinks we made the right choice for Emma.
Hope this helps and also do hope that everyone is recovering after the February surgery.
Kind regards
Dione
Hip Surgery?
Hi Charles, I was wondering in which doctor did the surgery for the hip. I been searching and seeing alot of doctors in trying to see if there was any chance of a hip being done. In the chance of you daughter and I our condition is rare that all doctors that I've seen never done surgery on someone that has PFFD. Also let me know of the outcome of the second surgery, would love to hear from you soon.
Thanks,
Yesenia
congrats
Emma's story has really inspired me as i have a 2 year old daughter who has just got an extension prosthesis she was meant to get it months ago but also has club foot so she needed an operation so they cancelled the prosthesis till Wednesday gone.
She is finding it very strange as she cannot sit down or stand up herself with her leg on. How did Emma cope when she first got her prosthestic leg and is it a straight leg. Looking really forward to your reply or anyone else that can give me information. Many thanks.
congrats
Hi Louise
Thanks for your reply! Emma actually didn't start wearing a prosthesis until she was 8 years old. She wore a built up shoe and hobbled/skipped along with her leg bent. She was resistant to wearing a prosthesis even though we had several made starting when she was about 6. It wasn't until we moved to Singapore, and she started a new school that she actually took the step to make the change.
It is great that your daughter will wear it, did she ever have a extended shoe? It would have been preferable if Emma had started wearing it earlier, but we do what we can do right?
Kind regards
Dione