Tuesday, March 6, 2012

Our story - Victoria and Baby James

My name is Victoria, and I am thrilled to be contributing some of my own experiences to Faith, Feet, and Love. Here is our story, also known as the story of Jamie and Dr. Poopy Pants.

James was born on January 8, 2011 after my water broke with a gush and 18 hours of pitocin augmented labor. He came literally flying out after 30 minutes of pushing and they plopped him on my belly. I asked the room, "What is that?" as I was not expecting a baby to appear so soon! Jamie was the most incredibly beautiful thing I had ever seen. The baby nurse made a comment after cleaning him up and administering the Apgar test "not to worry, that's not club foot." I didn't have any idea what she was talking about. In my eyes my new son was perfect in every way and his right foot was just a little turned in.

Fast forward to the first pediatrician appointment - we were undergoing treatment for jaundice and our doctor mentioned that his right foot was "more turned in than I like to see," but wasn't club foot. I actually wasn't even surprised his foot was a little turned in. After all, I had complained for months about the foot that was living in my rib cage!

At two weeks of life we had our check up with our pediatrician. Everything was proceeding well - Jamie's jaundice was under control, he was nursing well and gaining weight. However, his right foot was still not as flexible as our doctor had hoped. He suggested that we visit an orthopedist to rule out club foot and to get ideas on treatment to correct the turnout. We almost didn't call since it seemed like he was probably going to be fine, but we had to see.

We had a referral to one of the top pediatric orthopedists in our area. He took one look at our son's foot, and without an x-ray, declared he had mild club foot and needed manipulation and casting. We had only done the most scant research before our appointment, but had an idea of what the treatments would entail. What we didn't realize was how much a newborn would hate being held down while having his entire leg casted. Or how heart wrenching the decision to pursue treatment would be. The last thing we expected was to leave the doctor's office with Jamie's right leg in a cast.

Jamie managed to continue to grow and amaze us with his sweet personality even through these difficult times. And I haven't even gone into the colic, GERD, and food allergies! I was zealous about checking his little toes for color and warmth at the bottom of his cast. And I confess there were two times (over weekends, of course! when the doctor's office is closed) that the baby wouldn't stop screaming, his toes just didn't seem right, and we would take the cast off. I have heard it said that it is more difficult for the parents to go through with the treatments than the child. In some ways I think that is true... as my boy started lifting his head, turning over, and even doing the army man crawl, he seemed accustomed to not being able to bend his right leg. He didn't like it, of course, but it had always been that way. But for us, it was much worse because I was tempted to give him more time off, wanting him to know what it was like to have "normal" movement. We were always wondering if we were doing the right thing - if it's really so mild, why do we have to go through this seemingly barbaric treatment?

As weeks followed weeks, things with Dr. Poopy Pants started to come to a head. Every week we would ask how he was progressing, how many more weeks of casting he expected we would need, etc. and every time never received a straight answer. Even though we could see visible improvement, we still ended up going from "probably won't need the tenotomy" to "may need to do the procedure" to "we need to schedule the procedure next week." My husband and I were afraid that by not doing it we would require weeks more of casting and frustration for Jamie. So we chose to have the procedure done in the orthopedist's office, with a local anesthetic rather than the full out anesthesia at the hospital. Hearing my child scream in the other room was probably one of the most heart wrenching things I've ever had to sit through. But the thought of only three weeks and then no more cast kept us going.

It was around this time that we were discussing options for the brace, where our doctor informed us that we would be getting the Ponseti AFO shoes and foot abduction brace. After my husband did some research, we lobbied to have the Dobbs bar instead. It seemed like the ability to move the legs more with the articulating bar just couldn't be beat. Our doctor doesn't really do the Dobbs bar - apparently we are one of the few on the West Coast to use that system. Happily we were able to convince him and our insurance approved it.

When the casts come off, they look (and smell) rather terrible. That was especially true after the three weeks... I was horrified to see the state of my poor baby's leg, and not much relieved when I saw the contraption they wanted to put him in!

But honestly, the freedom the brace offered was so much better than the cast. Jamie finally started to enjoy tummy time instead of crying the whole time. He started wiggling and kicking and looking at the world... and we were all much happier. He still enjoys informing us that he is awake by slamming his metal legs into my nice wooden crib. :) It wasn't all fun and games to baby or parents, though. I was very upset to see marks on his precious skin from the straps on the shoes, which moleskin, various types of socks, and even the additional rubber saddle on the shoe never completely erased. It was hard to believe how tight I had to pull the straps in order for his heel to stay correctly down and so that he wouldn't get out of his shoes. Jamie was always so proud of himself when he would break out of his shoes - he usually got one off by straightening one leg out straight and pulling up with the other leg. He was such a little stinker!

Jamie began walking at 11 months and is now running all over the place causing mischief. He sleeps 11-12 hours a night in his brace, although not always peacefully when he gets stuck in the crib rails! I was hoping that I could say at this point, almost 14 months old, that it was easy, perfect, or "normal." Well, since Jamie is our only child I don't know about normal, and I suspect easy and perfect would always be elusive. But what I can say is that everything we have done we did for him. For his future. I want him to have the chance to be a world famous athlete, or whatever his heart desires, without having to worry about a physical problem holding him back. And as his parents, we can say that we are doing our best to give Jamie that chance. And that, and today's breakthrough of actually calling me "momma," make every tear worth it.

Thanks to Victoria for contributing to the Our Story feature for Faith Feet & Love. If you've got a story about dealing with clubfeet, or just want to share success stories, tips, or pictures, please contact us for more details.

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