Ella's Journey

My name is Christa Clawson and I live in Saint John, NB Canada. My husband John and I had a beautiful baby girl 6 weeks ago who's name is Ella Kathleen and she was born with PFFD in one leg also in that same leg, she has NO fibula either, but has a great working foot.

We saw our first doctor about Ella May 16th and we are so overwhelmed with this disease. I immiadatley started researching and came across this blog. I would really like to hear from other people living with this disease and or parents of children to let us know how you deal with this. Also we were told of the 3 options that are available to Ella for future development. Is there anyone out there that has had either the Leg lengthening, amputation of the foot with prosthetic and or Van Ness procedure that will give us some information, pros and cons to help with our decisions.

I really need to talk about this to keep my sanity, please let me know if anyone out there has any further advice.

Thank you

Christa and John

Just found out at 21 weeks our daughter has pffd

Hi there I am from Edmonton, Alberta, my husband and I just found out are second child has pffd in her one femur, about half the size of her other one. Right away the doctor gave us the option of terminating the pregnancy, in the next week if we want to. I cant do that. But I am having a very hard time with this disease. We met with a great lady at the Pediatric clinic who has dealt with children with pffd, she says our daughter can still walk, we cannot get the lengthening done, as the bone is about 50% different then the other one, but her other bones are just find as well as her feet. She recommended the Van Nins Surgery. I am just really sad right now, you want to have a healthy child, we have a 2 year old son already and he is completely fine. Is my daughter not going to have a good life because she has a prosthetic for the rest of her life? I am just really sad right now, it is alot to take in. Can someone please email me back, thank you.

L

hey

Hello again, you need to get a NEW doctor fast, contact the shriners. Please don't have an abortion your child will have a normal life. My Ella's leg is 50% shorter too and the leg lengthening is an option for us. add me on facebook if you want

christa clawson

Hi, I cant believe you are

Hi, I cant believe you are from SJ! I am from Sussex, NB and I know what your going through. I have an 8 month old son with PFFD in his left leg (short femur). We have been researching as well and it seemed all I did for a couple of months was research and worry. I am quite sure we are planning on lengthening surgery in the future for him. I know its hard not to worry but after you learn a little bit more about what she has and maybe have a bit of a plan for the future, you will have a little more peace.

wow

Wow Sussex this is great. I have talked to lots from other countries and now Edmonton AB a few, but Sussex. This is great for us to communicate. I am not sure what we will do, did you go to the IWK? We did and they gave us options of Van Nes procedure (turning the foot backwards and having a prostethic) - removing the foot and fusing the bones to 1 bone and having a prosthetic - Leg Legthining. I wanted a 2nd opinion so we contacted the Shriners (Montreal) did you contact them yet? if not do so THEY PAY for everything for you to go there. Dr Fassey (can't remember the correct spelling) from the shriners hospital is the specalist.

We will go back to the IWK in Sept because a NEW doctor Dr. Orwick is coming to the IWK that is supposed to be a specalist with this.

Feel free to add me to facebook -

Christa Clawson

Yes, we went to IWK back in

Yes, we went to IWK back in January but the Orthepaedic Surgeon we talked to has never performed lengthening surgery before and we feel very uncomfortable with him performing surgery on Isaac. We have thought about contacting Shriners but We are planning on going to Toronto Hospital for Sick Children as Dr Paley works there every couple of months. (He is a world reknown Doctor specializing in leg lengthening), We may not get to see him there but he is in charge of educating the doctors and we have been in contact through e-mail with him. We would go to Florida to see him but Medicare wont cover it of course. If you haven't found his website yet, I would encourage you to check it out as we learned a lot from him. www.limblengtheningdoc.org Isaac only has an inch and a half length discrepency so our best option is lengthening for him. He has a normal working leg and foot otherwise. I'd like to know how you make out in Montreal , its so hard to make decisions about where to take him because pffd is so rare. I hope everything goes well for you guys

hey christa this is zohaib

hey christa
this is zohaib from karachi. i'm 21 and in 3rd year of med school. throughout my life i've had several experiences and ideas that i'd like to share. i've tried the limb lengthening Illizarov method and i've also had tissue corrective surgery. i've been offered amputation pretty much throughout my life, and i've tried several types of prosthetics. at Ella's age, there are tons of possibilities! dont worry and there's no need to lose your sanity lol im 6ft tall yet my left femur is only ~3 inches long but i'm living life to the fullest! Honestly and most straightforwardly Ella's options depend on her EXACT situation. at exactly what position does her ankle lie? what are the total movements she can make? some pictures/a video/a detailed response from you should help us sort things out. infact for now, you may not have to do anything at all, and see how she turns out after a year or so. all surgery options are open as long as she's a growing child.
we're all here for you, dont worry! :D

Attn : Zohaib

Zohaib, Please contact me, I am in Karachi and have a little daughter with pffd. I want to contact with you for some guidance my detail is below:
Cell # 0343-1260869
javed_naqi@yahoo.com
Thanks

Hi Christa, i´m from germany

Hi Christa,
i´m from germany and our daughter also has pffd, born in oktober last year.
my english is not so good, but i just wanted to tell you how impotant it is to find a good doktor ho´s familiar with pffd, as it is very rare disease.
after many doktors we found dr. nader here in germany, and as far as i know, in us it´s dr. paley.
just kkep in contakt with different forums, and ask peaple with experience, there are more than one thinks.
first i felt very helpless and alone, but treatment is possilble...
also physiotherapy is good to do (vojta), we´ll start just now,but i read it´s actually recommendet after bith already.
Our doughter has about 2,5 cm difference on the right leg, and hip is still in question.
in few month when she starts pulling up she´l get her firt orthese, to compensate the difference.
hope you could understand something, don´´t know all the english words....
hoe big is the difference with ella´s leg?
all the best and strenght;)
laura

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