Our son is just 7 weeks old and has been diagnosed with both tibia hememlia and pffd. We will need to amputate at a year of age. This is our first child. How did everyone come to except this outcome of their situations. even though we knew of this inutero it is so hard to hear.
your son
Why is amputation the only option given to you? There are other options out there. Such as lengthening or nonsurgical methods.
My daughter has pffd and fibular hemimelia. Her left foot comes to the level of her right knee. The surgical options we were given were amputation, Van Ness rotation or lengthening. We have decided to do lengthening.
Others with similar leg length discrepancies have decided nonsurgical methods like using the Moseley prosthetic device.
In some cases amputation may be the best option, but you should be aware that it's not the only one.
Beth Reinert
my apologies
I wanted to apologize if the comments I posted on 4/22 were inappropriate to the message you posted. I do not know the full extent or severity of your son's diagnosis.
When I read your post, I thought of my own experiences with doctors after learning of my daughter's pffd. First off, out of the 4 doctors we met with, two of them only gave us the option of Van Ness. The other two told us lengthening was also an option. Through this I've learned that not all doctors are comfortable or capable of performing the same treatments.
Secondly, the doctor who interpretted my ultrasound didn't even know the name of the condition our daughter would be born with. He focused more on the fact that she would have fibular hemimelia than on her short femur. After this same doctor gave us the option of terminating my pregancy just because of her short leg and missing bone (which we immediately declined!!), he told us that it was a shame she had a perfect foot. That would make it harder for us to amputate. And in his opinion, amputation was the best treatment. (He didn't even know what was wrong with her. How could he offer a treatment option?!?) This taught me that although, the prenatal doctors are quite necesary, they don't know everything. It is our responsibility as parents to be advocates for our children and we must do "research" to determine the best treatment for our kids.
Once again I apologize if I have offended anyone. As you can probably tell, I get pretty passionate over certain aspects of my daughters treatment.
On a lighter note... Our daughter is almost two and we love her dearly. We try not to treat any differently than if she were both with 2 "typical" legs. She gets frustrated some times, but we work through each situation together.
Beth
no offense taken
Hello,
I appreciate all the feedbak and no offense was taken. We were told at 21 weeks pregnant that he had fibula hememeila but as it turns out, he is missing his tibia, therefor doesnt have a knee or ankle. I have asked over and over why lenghting isnt an option and they tell me it just wouldnt support his body weight. I wish his tibia was there, but it isnt and he is still our little angel perfect in everyway. Let me know if anyone else has tibia hemelia as well as pffd. it is so nice to have founf this website, i feel as though im not totally alone.
Once angain I am not offened at all, i appreciate all the input.
Jenna
A positive attitude
Hi there. My daughter is almost 6 months old and she has PFFD. It was not detected on the ultrasound and we found out the day she was born. The best way I found to deal with the situation is by having a positive attitude. No matter what treatment option you choose (and, as Beth said in the previous post there are many options) your son will be just like any other kid. He will crawl, walk, play and be happy. As parents I think we have to instill that in them -- let them know that they are no different, have the same type of expectations that we would of a kid with the same length legs. Your son is a perfectly healthy little boy who does not have any life threatening disease -- just a condition that he will adapt to. That is what I keep telling myself everyday. Another thing that has really helped is getting to know others that are in similar situations. I have made many friends from this website and other research I have done on the subject. They are a great source of support and understanding.
Good luck to you, hang in there, and if you ever want to talk feel free to email me at mcd3@myway.com.
Maria
Hi. My son is almost 2
Hi. My son is almost 2 years old and has unilateral PFFD on his right leg. We were unaware that that he had PFFD and it was diagnosed at birth. He is our first child as well.
Some of the advice I can offer is to be patient and take it one day at a time. The course of treatment is not always easy to hear, but always remember that you are trying to decide what is best for your son. You can always seek out a 2nd, 3rd, 4th, etc. opinion if that is what is best for your family.
At the time that my son was born I thought I would never be able to figure out what was best, where to find information (as this is so rare), how to help him, etc., but with time things fell in to place.
We all know how hard this can be, but you can do it! Take time and enjoy your son and you will figure out the best course of treatment for him along the way.
Beth
My 3 month old daughter also
My 3 month old daughter also has tibial hemimelia of the right leg. She will also have her leg amputated at the knee at about a year of age. We did not know about her condition until she was born.
Isnt amazing how love can
Isnt amazing how love can over shadow everything! We knew before birth but were unaware of the severity which was the worst case of this problem, but praise god he is here and alive, i cant imagine life with out him!
Jenna, I know exactly how
Jenna,
I know exactly how you feel! Congrats on your new bundle of joy! Enjoy every minute, they grow so fast.
Courtney
web site
I wanted to let you know about a website for hemimelia. It's hemimelia.co.uk It has a wonderful support group along with a yahoo group where you can share pictures. I've found it very useful and comforting. My daughter has tibial hemimelia and a short femur. We haven't officially been told that she has PFFD, but after doing some research of my own I believe this to be true. We are going back to Texas Scottish Rite hospital in June to meet with her doctor and discuss her MRI results. Some days are harder than others, but has soon as I look at her beautiful little face and smile, I feel so blessed to have been given the chance to raise such a special and adorable child.
Courtney