As many of you know, Merritt wore a cast on his entire left leg for the first few months of his life. Practically, this meant that I only actually saw his little leg for a couple hours each week during his cast changes. Well, at one of these cast changes I noticed his left leg seemed to be shorter. After alerting the doctor, Merritt was forced to endure manipulations, stretches, and finally x-rays which confirmed what I had feared most from day one... there is more wrong.
Merritt was diagnosed that day with Fibular Hemimelia. A condition that Merritt's doctor explained, was not my fault. How could it not be my fault? I made this little man... I screwed him up... all of these thoughts whirled through my mind. I know I shouldn't feel that way, but I would be lying if I said that I still didn't believe it to be true.
The doctor explained further that Merritt's leg will always be proportionately shorter than his right leg and that this most likely caused his clubfoot. He went on to say that most of the children born with Merritt's condition have four toes, at the most, and we should feel "lucky" because Merritt has all five. Yeah, that's what I felt... lucky.
Treatment... nothing we could do then. Just wait and see. Wait and see how much of a discrepancy Merritt would have. At that point, the little guy was just too little to properly predict. But, the doctor gave his best guess, which was about 2 inches at skeletal maturity. 2 inches would require one leg lengthening.
But what happens if there is going to be more of a difference? How is a leg lengthened? I needed answers.
As soon as we made it home I started the internet research. I joined blogs and emailed doctors around the country. I actually emailed Dr. Dror Paley at 2:30 am and he called me back at 7:15am that morning!
At the time, Dr. Paley was practicing in Baltimore at the time, but informed me that he was considering moving his practice to Saint Mary's Hospital in West Palm Beach.... 45 minutes from our home!!!! Seriously???? YES!!!!! If there was ever a time to thank God... I think I found it.
Long story short, we made an appointment to see the good doctor. More on that later! Now, my time is up and I have to STUDY! (Yup, studying for the Florida Bar and taking it Feb 23 and 24. ahhhh!) :)
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It can be so hard not to blame yourself. I know...been there, done that. I've decided that the how and why are not worth my time, but the now is what I need to focus on. And there is plenty of stuff in the now to fill up my time.
ReplyDeleteWe are fortunate that Matthew's leg length discrepancy is considerably small. It is currently 1/2 inch and Dr. Dobbs feels it won't change much. So he won't need any surgery for that... Good news seeing he has had a few already and could still have more in the future with the clubfoot/nerve damage combination.
Btw, you should check out these blogs
http://sympathypains.com/
http://theanviltree.com/
The first one is the dad and the second is the mom of a little boy with clubfoot and leg length issues due to posteromedial bowing of the tibia. They don't blog about it too much but thought I would pass on someone who was dealing with some similar issues.
Funny that your two boys are also 15 m apart! Sure makes it difficult in the early years, but now they are the best of friends and I couldn't imagine having them farther apart. I love it.
You were asking how they found the nerve damage. When Matthew was 4 m old, he had not had a tenotomy and was in the shoes and bar. I thought his foot looked 'dead' but didn't say that to anyone because it felt odd to say that of your baby. So, instead I sent an email to Dr Ponseti saying I thought his foot did not look good. He sent me on to a Ponseti trained doctor (10 hour drive away) who agreed Matthew's foot was not corrected and did a tenotomy. After that, he was able to wear the shoes and bar well but I still thought his foot looked different then all the other clubfoot kids.
Then I got pregnant when he was 8 m old.My first natural pregnancy. Matthew took three years (two of those years with a fertility doctor), more clomid then I thought was aloud, 5 IUI's and 3 miscarriages. Needless to say we were so shocked and preoccupied that my focus was shifted from Matthew's foot.
It wasn't until a regular appointment with his orthopedic surgeon at 15 m (the same day I had to have an emergency induction to have Ryan) that the doctor said he thought he had nerve damage. SOmeone else finally saw what I had seen all along. He was not able to move his foot or toes upwards.
When he was 18 m old he had a nerve conduction test done to confirm it.
At 22 m old he had an MRI to make sure it wasn't a tethered cord or something else.
He started wearing an AFO at 18 m to counteract the drop foot. He has been wearing one ever since.
The leg length difference was discovered through x-rays with Dr Dobbs last year. He now wears a lift on his shoe.
Because of the nerve damage and shorter leg, his clubfoot keeps regressing. His tendon gets tight and his foot twists within months of being out of a cast.
Matthew is now 7 yrs and still having regular regressions. I have lost count as to how many. I couldn't even guess how many casts he has had. I keep hoping that one day this will be behind us.
I am looking forward to hearing about Merrit's journey. And hats off to you with two little ones and studying for the Bar! I swear I couldn't remember to brush my teeth back then! Good luck!
I just finished reading your page about Merritt and well crying. I admire your strength. He is so lucky to have such amazing parents that are taking the time to get him the very best care. Our family continues to pray for you and your family.
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