Olivia was born on June 11, 2004. We learned at my routine ultrasound while I was pregnant with Olivia that she would be born with a short left leg. Her left leg is about half the length of her right. Her left foot is at about the same level as her right knee. I don’t know the classification yet, but she has a short femur and fibular hemimelia.
We met with 3 pediatric orthopedic surgeons before choosing Dr. Herzenberg and Dr. Paley in Baltimore.
For Olivia, there are basically 3 options for treatment. (1) They could remove her foot and give her a prosthesis. Both the doctor and we believe that this is not the best option. So it’s not even being considered at this time. (2) Since her left foot is level with her right knee they could fuse her left knee, turn her left foot around 180 degrees (making her foot her new knee) and give her a prosthesis. This is called rotationplasty or the Van Nes procedure. We’re told that this would require only 1 surgery. (3) They could lengthen her leg. Due to the shortness of her left leg, we’re told that this would require about 8 surgeries. … The doctor and my husband are leaning toward the Van Nes, but I am still leaning toward the lengthening. My husband doesn’t want Olivia to have to endure the suffering associated with the lengthening. I want her to have her own leg in the end, but I don’t want her to suffer either. The doctor told us that we do not have to make our treatment decision now. The first thing that needs to happen is Olivia needs surgery to correct the deformities of her knee and hip. It’s called Super Hip/Super Knee surgery. She will get this surgery when she is 18 to 24 months old. The doctor said that after that surgery we will need to choose a treatment option. So we’ll see how she handles it and take it from there. … Olivia’s next appointment is in late August 2005 with Dr. Paley.
Comments
Dr. Paley or Shriners?
My son was born in Dec. 2003 and has unilateral PFFD that is of moderate severity. I have been in email contact with Dr. Paley and we will be making a visit to his center soon. We will pursue lengthening. I have contacted the Shriner's hospital and am considering contacting Dr. Mark Dahl at the Minnestoa Center for Limb Lengthening.
Of course, I like the idea of free care at the Shriners Hospital, since I am in Omaha, NE and transportation will be an expense even though insurance will pay for the surgeries.
Does anyone have experience with these Doctors and prefer one over the other?
Your response is greatly appreciated.
Janelle
Van Nes
Hi Beth,
We have similar situations in that my daughter has pffd (right leg) but also has fibular hemmimelia. We were told by our doctor here in Canada that Van Nes was impossible without the tibia to hold everything in place. I'm interested in whether Dr. Paley believes otherwise. I would really like to keep in touch as I really don't want to amputate Abbey's foot, but we haven't been give any other option. Feel free to email me at my home email. danielle_vanduzer@hotmail.com.
Good luck at your next appointment.
Danielle
Dr. Paley
Five doctors before Dr. Paley told us there was nothing they could do for our daughter Hailey. Amputation was the only option. We go to see Dr.Paley and the first words out of his mouth are "I can do this!" Double digit inches of lengthening later, he was right. He's a visionary and thats what makes him great. Go see Dror Paley!
Hi Beth,
I believe you tried to e-mail me but I think you were spammed out. Try again:www.mtfit1@hotmail.com if you'd like. Be sure to mention PFFD on subject. Weird my 23 year old baby was born on June11th also!!!! and we have met Dr. Paley from Baltimore. As a matter of fact, I know people he's worked w/. He is a great doc!!!
Yes, these decisions are rough!!!! As a parent, you almost wish you didn't have to make them at all. You would almost perfer to not have a choice. I remember feelings of guilt and complete responsibility if anything turned out wrong. We all want the best for our children, and our hearts break whenever they encounter pain of any sort. I can't tell you what is right or wrong or best for you child, I can only say that "yes", "lengthenings are tough, yes, they certainly are painful, yes, the kids go through alot....., most likely forever. However, I can also say that through all that she has been though, she's truly an amazing beautiful and very smart girl. Her college paper was on being different and how it made peer pressure so much less difficult for her than the others b/c she was never actually the same. Therefore, she never had to try to be.
She's never known a life outside of the one she's had and honestly, outside of the issues she doesn't consider herself different on a day to day basis. Nothing has stopped her!!!!- it's all she's ever known and the way she sees it, it is what it is. Those that know her - forget. She has a pretty regular life. She dates, she travels, she works, she's going to grad school next fall, she was a cheerleader as a child, skied (however, not very easily) and did karate, played softball. She rode a bike when she could, and didn't when she wasn't able, she competed in Miss NJ Teen, she was crowned high school princess and voted cutest in senior year!!!! When it was time to drive, I worried that her leg wouldn't react as it should especially b/c she had had a surgery not much before, yet she managed beautifully.......So, you see, regardless, as I think back to those trying years.... yes, they were difficult, no I'm not sure that we did the right thing, yes - she's turned out to be an incredible gift and beautiful blessing, no - she, herself, has no regrets and frankly, to be perfectly honest w/ you eventually, I can only say that future heartbreaks have hurt the 2 of us probably just as much. So, all in all, without making light of a very difficult situation, life as a mom will always have it's moments of struggle and moments of complete and utter bliss concerning your child!!!
I have a son as well. And, he does not have PFFD. However, he was very abused by other children b/c he was chubby. Actually, kids were so much tougher on him than they had ever been w/ her!!! The two love each other completely and are there for one another always. They both live in Philly. He's a senior in college.
Finally, if you take this deformity out of the equation, truly they are just our beautiful children.
I wish you the best & God bless!
M