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Chezza's Story

I am simi new to this site and figured Id go ahead and share my story. My husband and I just had our first child, a baby girl, on August 20th 09. We got married last November and I got off Birth Control the night before we got married since we were wanting to start a family as soon as possible. I had been on prenatals for a few months prior after our OBGYN recommended it. We got married, went to Vegas and a month later, found out we were pregnant. I got very sick with her. Lost about 25lbs and wasn't able to take my prenatal vitamines. I went to the ER once because I was throwing up blood and I couldn't even keep water down. But by the time my 16th week rolled around, I was starting to keep more food and water down and gaining back the weight I had lost. I expressed my concerns to my OB but he wasn't too concerned especially since i had been taking my prenatals for so long. So when our 20 week ultrasound came along, I was so nervous and very anxious to make sure she was growing okay and developed properly. So when we saw her on the ultrasound and she measured perfectly, I felt much relief. The rest of my pregnancy was normal. I did have to be induced but the labor went fast and she had no complications. Chezza came into this world on August 20th and weighed 7lbs 5oz and was 20 inches long. She was beautiful and healthy and perfect. For about an hour, I was in pure heaven. That was, until the nurse came in and changed her diaper and noticed that her right leg was shorter than the other. I remember my heart just dropped. I think it litereally stopped beating. All my husband and I could do was cry. So the nurse called the staff pediatrician and she came in and looked her over. She was healthy in every single way with the exception of her leg so my husband and I did our best to just enjoy her. It wasn't easy to not think about it...she had xrays done her 1st day of life and than the doctors were coming in and looking at was and has been the hardest thing for me to go through.

The specialist in the hospital told us to go see an pediatric ortho specialist asap. Im a nurse and I know a few people who are nurses at the local childrens hospital in St. Louis MO. I got a refereal from a friend and got an appointment to meet with him in early September. It was there that he told us that she had PFFD(although I knew it was coming from the research i had done when i came home, it didn't make it any easier to actually hear it be officially diagnosed). He scheduled her for an ultrasound of her hips and than told us that we would come back in 6 months to see how things are progressing. The ultrasound of her hip showed that she has a socket but no femoral head to go in it and that she will need a hip stabalizing surgery once she is walking(i believe her knee and ankle are okay). One thing that surprised me was that he never once mentioned ampuatation...he just said that she could have bone lenthening surgeries done(i believe she has about a 2.5inch difference). So that is pretty much where we are now. Im building up a list of questions to ask at our next visit in about 4 months. I have good days and I have bad days. I get teared up when i see those fisher price commericial of toddlers riding on their toys and thinking to myself "will my baby girl even be able to do that". She's at the point where she is really kicking her legs and when i see her short leg not moving much, it makes me so sad. But seeing pictures of the other kids on this site and reading their stories and seeing how they grow up just like the other kids gives me so much hope.

I applied to Shriners this past week so I am hoping to hear from them. I emailed Dr. Paley and was rather disappointed in him. I basically asked if he could give me a referral to a specialist in st. louis(bc i want to make sure I get a few opinions but dont have the finances to go see him) and he told me that no one would suggest anything other than amputation with her difference and that if i want lengthening, that i should fly down and see him. SOunds like his head has gotten a little too big. So my 1st lesson learned is not to just assume that the "best" is truely the best. Well I hope to keep updates on her development and future surgeries. I'd love to talk to anyone that is from Missouri and especially anyone that has been to Shriners here in st. louis. Im just mainly here for support. There is a lot of questions i still have for my daughters future. And also, my fear of having more children now that I know she will need surgeries and lots of extra care. Feel free to email me at



I remember feeling very similar, time changes everything. Soon you will be blown away by how she will adjust and overcome. My son went skiing last winter at two and a half. I just bought him a snowboard for this season and I know he is going to tear it up!! He has pffd also and had an amputation at 11 months. It is hard to deal with but just remember time will change your perseption. I have video of him on skiis, he also rides his scooter and his balance bike, he jumps on the trampoline, swims, goes on long walks. everything she wants to do she will find a way. It is very hard at first, I had a very similar experience but I promise you that it gets better. If you want to chat my email is kathyfleming4@gmail.

Hi Vanessa,
My husband and I have a 3 year old son who was born with pffd on his right leg as well. His hips are okay, however his knee and ankle are turned and need to be straightened when we lengthen. His right foot only has 4 toes and the foot is smaller as well. It's weird that when he was born my husband and I were a little saddened by the news of his difference but came to the conclusion that God gave us this special little boy to guide, love and take care of. His leg length discrepancy is now 4 cm so it's not huge. We just had our annual appointment at Children's Hospital in Philadelphia and the doctor wanted us to make an appointment for stretching surgery. We knew it was coming, but didn't know it was so soon! Now we are making arrangements to take off of work to care for our little man who will wear a fixator for 6-8 months.
I came to start thinking today this really puts things in life into perspective. It could always be worse. Our children could have a terminal illness. Your lovely baby girl will most likely not know she is different in any way while she is young and she'll adapt and make her own accommodations in whatever she does. Good luck finding comfort and a doctor you like. Get as many Dr's opinions as you can so you know you are doing the best for your child.
I'll be thinking of you! :)
God bless,