Monday, August 8, 2011

Cameron's Diagnosis

"Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope."  

- Maya Angelou

      Being our first child, we thought nothing at all of Cameron taking her very first step at 12 months and then not progressing to really walk until late in her 14th month. It didn't really become apparent that there may be an issue until at 15 months old, we realized she was still not making any progress with walking and started to have a pronounced gait to her walk. She was always trying to tip toe with her left foot. So, one day we sat her down on her changing table, removed her diaper, and came to the horrifying realization that her right leg was almost an inch longer than her left. We made an appointment with her pediatrician immediately and then the google searches began. (which is sometimes just not a good idea, but totally irresistible) We had no idea what the problem was that she was facing and so set in the feeling we would get so used to over the next few months, the fear of the unknown.
      Cam had been perfectly healthy up to this point. Not even haven taken antibiotics or tylenol more than twice. For the first time as parents, we felt a total lack of control. We couldn't make this better. It was the most defeating feeling I'd ever experienced and I must have already blocked it out because it is hard to even recall now in order to type this blog. We now know that she is going to be just fine.
So, our journey started out with a trip to a local pediatrician here in Corpus Christi. We waited over an hour to be told that "Yes, there is in fact a leg length discrepancy" and she was sent off for X-rays, which we had done right away. The results were phoned back to us later that day. The pediatrician in a solemn tone informed me that it wasn't good news.  Her left hip was extremely out of place and the socket was very shallow. She would need to see a specialist right away.  There is nothing you can do with news like that except, well, swallow it bravely and take the next step. We then waited over two weeks to see the specialist.
      We took her to an orthopedic surgeon here in CC whom had examined her X-rays. The surgeon sat us down and basically told us that she would need a very invasive surgery. He would need to cut part of her bone, move the hip back in place, and put Cameron in a body cast. I don't remember much more of the details of the surgery he was ready to perform because my husband and I were in absolute shock. He compared this operation to being "a little like going overseas in combat" and said that the operation was a little like a "mine field" because there were a few possible complications. He mentioned that numerous surgeries may need to be done, the words "avascular necrosis" came up a couple times, and that the end result, if surgeries weren't successful would be just to fuse her femur to her hip bone. All of this was explained to us in around 15 minutes and we were just sitting there with tears in our eyes. This was a little harder to swallow. Thank goodness for family being there with us and giving us much needed encouragement (Thanks Megan!)
      The decision was made right away that we needed a second opinion. My mom had already reminded us about the Texas Scottish Rite Hospital in Dallas being THE place for children with orthopedic problems to go. So, we quickly applied and the waiting game started. Meanwhile, of course, Cam is still the happiest baby on the planet. Hobbling all over the place and getting into everything... just having the time of her life. =) We were very fortunate in that we didn't have to wait long. We were accepted and got an appointment with a highly trained and experienced orthopedic surgeon. That is when our adventures to Dallas began.
Our first appointment at TSRH was on June 15, 2011. Of course we were worried, but we had heard so many good, inspiring stories about babies/toddlers with developmental dysplasia of the hip (DDH) and about TSRH, that we were really just optimistic and hoping for the best. (Cam hadn't officially been diagnosed with DDH by the first ortho surgeon ((who didn't even give us a real diagnosis)), but we had figured out that's what it was.
      We were impressed with TSRH right away. They were super organized and timely, not to mention how friendly everyone was. We knew we were in the right place when instead of seeing a bunch of kiddos with broken arms and legs, there were children cruising around with all kinds of contraptions on their feet, head, legs, etc. These doctors here were the specialists, not the broken bone doctor we had gone to see in CC. We didn't wait long and Cameron was immediately taken to get new, more clear X-rays. We then met the doctor and nursing team that would be taking care of Cam throughout her journey. They were all amazing from the beginning. Overall all, they spent almost 2 hours with us and explained every detail of their goals for Cameron's surgery and recovery. The doctor explained that she did have DDH and that she may or may not have been born with her hip out of place. It most likely was just always loose and worked its way out over time, explaining why no doctors ever caught the problem. The doctor recommended that Cameron be placed in what they call Bryant's traction for 1 month prior to her surgery in order to loosen up all of that connective tissue, etc. that may get in the way during surgery or give resistance to bones trying to settle in new places afterward. They explained that the medical field, as well as their hospital's surgeons are all divided on the issue. Some think that it does nothing at all, while others say that it helps out a ton and wouldn't do it any other way. In order to help clear up the issue, the hospital decided to conduct some research on their DDH patients, following them throughout their entire treatment and afterward to see if those who had participated in the traction actually benefited more so than the others. That being said, they convinced us to put Cam into traction and we said we would participate in their research study. It couldn't hurt and it would be worse to wonder later on if the traction may have helped out in some way. So we went for it! After her month in traction, Cameron would go in for surgery. The doctor explained that there was a chance that she may get away with having only a closed reduction surgery where they physically force the hip back into place without opening her up, but that there was a better chance that because of her age (howling her hip had been out) and severity of the displacement, that they would need to go in and do some "rearranging" to ensure her hip would rest well in socket. Either way, we were just ready to get it done and start the healing process. Her doctor and his team were super optimistic and acted like these procedures were no big deal, which made us feel great.
      The moral of this story is, don't except a frightening diagnosis when anything at all about it doesn't add up. Trust your common sense and get a second opinion for your child. Do the research and figure out where the best care is located and if at all possible, make it available to them. It has been tough driving back and forth to Dallas and the business that her dad and I are starting up has suffered, but there is nothing at all more important than her being able to walk normally someday! We would have sacrificed whatever we had to in order for her to get the best outcome and we rest easy at night knowing that she is in good hands at TSRH.

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