My son, Merritt, was born with a left clubbed foot and congenital shortening of his left leg. Our journey in understanding his conditions and in seeking the best possible treatments has definitely had its ups and downs. This blog is my way of sharing our experiences. It is my hope that similarly situated parents may use information on this page as a resource and as inspiration. Thank you for visiting!

Thursday, January 21, 2010

Doctors, doctors, doctors

First things first... we needed a doctor. After much internet research we figured out that Merritt needed Ponseti treatment for his clubbed foot. (Oh, forgot to mention this in my last post. We were unaware of Merritt's short leg until he was about 4 weeks old. At this point, we thought we were dealing with a clubbed foot only.)

(For more information on Ponseti clubfoot treatment, please visit the official website for the Ponseti International Association.)

We found a pediatric orthopedic surgeon through our insurance company. Went to her. She told us that she followed Ponseti protocol. Merritt was put into his first cast at that visit. He was less than one week old and had a cast from the tip of his toes all the way up to the very top of his leg. It was awful. I cried and cried and cried. Then, I would calm down a bit, until it was time to change his diaper or give him a sponge bath, and I would cry some more. It was just terrible. I hated seeing my precious newborn in a cast.

Each week, I would make the 2 hour drive to the doctor and Merritt would be fitted with a new cast. The process was grueling. First, the old cast had to be sawed off and then the doctor would stretch Merritt's foot into a more corrected position. Merritt was be crying in pain during these stretches. Finally, the new cast would be applied and Merritt would normally fall asleep.

During these first few weeks of treatment I had the opportunity to research club foot treatments. Certain aspects of this doctor's treatment just didn't add up with the Ponseti protocol I was learning about. Most alarming, was that this doctor wanted to put Merritt under general anesthesia in order to perform a tenatomy (a procedure where the doctor cuts the child's Achilles Tendon.) According to Ponseti protocol, this should be an in office procedure using only localized anesthetic. I did not want my newborn to be "put under." So, I found a new doctor. We had to drive even farther, but it was well worth it!

The new doctor, Merritt's current doctor, is just amazing. At our first visit, he sat with us and he explained the treatment and how it works... the REAL Ponseti treatment. Our previous doctor had wasted weeks of Merritt's treatment by falsly claiming she was following the Ponseti method. It was so upsetting, but at least we were finally on the right track.

Point of this is... If your child is born with a clubbed foot or bilateral club feet, please check the list of Ponseti CERTIFIED doctors before making your first appointment. You can find this list on the website linked in the beginning of this post.

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