McKenna's progress during limb lengthening...

Hello Everyone!!

Our little girl McKenna was born on July 7th, 1997, and was diagnosed with PFFD, class "B", right leg only. Just about 2 months before she was born we were in for a checkup and they did an ultra sound to detect her size as her older brother was over 10 lbs at birth. Everything looked fine, but then the nurse doing the exam noticed something and called in a doctor to confirm her findings. That is when we were thrown into the world of PFFD.

We were shown old black and white photos of children with varying classes of PFFD, and most of those photos also showed other birth issues not related to PFFD. We were shocked, scared, and confused about why this happened to our little girl. One doctor at the hospital did hand us a card for a limb lengthening hospital in St. Paul, MN. and said to contact them once our little girl arrived. We did, and once she was around 3 months old we brought her in for an evaluation.

The doctor there, Dr. Dahl, gave us a tour of his new hospital, told us how far he alone has advanced the limb lengthening proceedure, and how wonderful things were going. He took us to see a patient in the next room who had the Iliizarov device on and showed us how it works, what it looks like, and what his patients outlook was. He then took us back to our room and said "Ok, now we need to discuss the "a" word...." The "a" word??? We weren't quite following him. Then he went on to explain that our daughter's case was too complicated for lengthening, and we should consider amputation early so she will learn to use prosthetics for walking. Wham!! You would have swore he sucked all the air out of the room... This is when we thanked him for his time, and said we would get back to him.

That night I sat in front of my computer searching for answers, typing in anything I could think of using the Yahoo search engine when I finally typed "PFFD" and was directed to the 1 site on the whole world wide web that had any information back then... The PFFD.vsg, and through that site I was able to contact several parents who then contacted me and they shared their stories. One parent, Melissa, (who if you are reading this please contact us as we sure miss you and your family), was a wonderful source of information about a doctor named Dr. Dror Paley who worked in Baltimore, MD. We spoke to her several times and finally flew out for our first visit with Dr. Paley and his team, and afterwards met Melissa and her family and we just knew that was where we needed to be. We had our first prep. surgery which corrected the "bend" in the thigh bone, and also was the first patient to have the "super hip" proceedure done which re-aligned McKenna's hip socket to give her better mobility. This proceedure made what we called a "mini thigh bone" that was straight, but smaller than her other leg. Then in 2001 we had our first lengthening. We gained about 2.625" of new length and McKenna was able to purchase her first pair of shoes without a lift!!!! Since that time we slowly added to her lift until March of 2005 when we went back for our 2nd lengthening at which time she had about a 3" lift on the bottom of her shoe. She calls it her "Super Shoe", and suprisingly it hasn't slowed her down a bit.

All of this leads us to today, June 1st, 2005. McKenna is at the Ruben Institute for Advanced Orthopedics in Baltimore Maryland. This campus is located at the Mount Siani Hostpital, and everything is going quite well. Since we had our first lengthening at the Kernan Medical Center things have changed quite a bit. The progress of the types of devices they are using, and the physical therapy has been amazing over the last 4 years. So far McKenna gained about 1.5" of length, and that would put us on a target of 2.5/3.0" by the time we are done. The physical therapy staff had a major change over in the middle of our stay, but the transition went off without a hitch. The staff monitors every little detail. Range of motion in the hip, knee, leg, ankle and even the toes are watched very closely. They monitor the pin sites for infection daily, and keep a close eye on any nerve or muscle pains to protect from any perminant damage. They even have in house tutoring to keep the kids up to speed with their homework. They swim every day in a specialy made pool to help keep the muscles and tendons loose, and this also seems to help keep the pin sites clean due to the chemical mixture in the pool. Also, they have started schedualing a therapist for an hour a week to also monitor the mental health of the kids also, which we find most comforting. Overall we are very impressed with the quality of care we have received so far.

We have tried to sum up all the info. so far, and as always alot of small details have been left out, but we wanted you to get the basic idea for now. As a famous author once wrote online, you will need to find your "Best right answer" of what works for you and your family. We decided in the beginning that we wanted to share our story with anyone that was willing to listen. We have tried to keep a video diary along the way which we have mailed out all over the world to help people to see another choice they have. We also have tried to post on several websites to also offer our support to families just like Melissa did for us in the beginning. We have met so many wonderful families along the way and have learned so much about them and ourselves on this journey. We won't hide the fact that this proceedure is tough. Tough on you and your child physically, mentally, and financially. For us we had to focus on the fact that these lengthenings were going to be hard, but in the long run it would mean a lifetime of not having to struggle with the complications of amptutation. That is our best right answer for now, and by sharing our story with others we hope to give them the chance to see what options are available. So, if you wish to contact us we would love to share any info. we have. Our phone number is (763)494-8823 and you can call us anytime day or night. You can even call collect. If you are out in Baltimore for a visit feel free to let us know when you will arrive and we will try to setup a time that we can get together and chat. What we have found so far is that talking on the phone or meeting in person seems to help the best. Emails work ok, but when you talk to a live person you get the answers right away to quick questions that just pop up while you are chatting.

Anyways, thanks so much for taking the time to read our little story, and we will work hard to help others to learn from both our victories, and our setbacks to try to make things go smoother for everyone in the future. Good luck, and god bless!!!

Chuck, Karla, Dylan & McKenna
8183 Everest Lane North
Maple Grove, MN. 55311
(763)494-8823
ChuckBerg@msn.com

P.S. You can also contact Dr. Dror Paley's team at 1-800-221-8425 if you like.

Thank you so much for

Thank you so much for sharing your story. We will be in Baltimore for our sons first surgery in September. After reading your story I feel so much better. I have felt great about our decisions so far but every once in awhile we have doubts and hearing your story just makes our decision easier. I do have questions for you and would love to call you. I will try to call this week. Thank you for taking the time to share this information. Sincerely, Staci
Bryant- 1 year old with PFFD -right leg class c

An email brought this to our attention...

Dear Everyone,

We need to say we are sorry to anyone who already has had an amputation done. In our haste to share our story we didn't take into account the possibility that we might offend some readers with our story. The following is a copy of a letter we sent to someone who asked why we decided to lengthen...

********************************************************************

I am so sorry if you took my posts to mean amputation is a bad thing....I forget that when I post my long winded explanations of what we have done that other people will read it and feel that I am against amputation. Our story actually started by talking to our neighbor who had a bad car accident 4 years before McKenna was born and had her leg amputated close to her hip and we spoke to her several times to talk about what our plan might be.

You see not every case is the same with PFFD, and with different classifications there are different options. Our case involves a possible total of 4 or 5 surgeries over 13 years. Each stay in Baltimore lasts 4 to 5 months. In talking with our neighbor who runs in marathons and has had her picture in several magazines showing all she can do she pointed out that yes these surgeries were going to be difficult, but if there was a chance to make things work we should give it a try. She said that no matter what our daughter McKenna was going to be ok, which was the most important thing for us, and that even if things didn't go well she would still run, climb, ride horses, and do anything she wants. It was from talking with her that we felt some relief that everything was going to be ok.

Before McKenna was born we went in for an ultrasound as her brother was over 10 lbs at birth, and they wanted to establish her birth weight. It was then that the nurse thought McKenna didn't even have a right leg, and we were rushed into another room for more advanced ultrasound screening. Once they found her thigh bone they brought my wife and I to another room and showed us all kinds of old photos of what they thought was happening. Old black and white photos of all kinds of PFFD. We went in without a clue what McKenna had, and in 3 hours we were informed that our daughter might have mental problems, deformed face, arms and legs, missing toes and fingers and the whole boat. We were in shock. From that time until McKenna was born we looked everywhere for information and there wasn't much back then. That was when we started talking more with our neighbor. For the next year we spoke with several doctors and again chatted with our neighbor letting her know how things were looking. That was when she finally suggested that we give it a shot. She said no matter what there will be some pain either from these surgeries, or from the prosthetics, and there are definite costs involved in both. She said to give it a shot, but to talk to as many people who had the lengthening done as possible to be aware of any problems. And I guess that is what we have done.

Again my whole family wants to apologize for any inference that amputation is a bad thing. In our rush to share our story we didn't even think about how our words would affect others, and we are truly sorry. I hope you can forgive us for our lack of foresight, and if there is anything we can do just let us know.

Sincerely,

Chuck, Karla, Dylan & McKenna

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