We got our in-utero diagnosis of baby A having a clubfoot for the first time on December 3, 2009. After all we had been through with the miscarriages and then the beginning of this pregnancy with baby B having less fluid and a smaller sac and no one expecting him to make it really (except me- I just knew he would) I was dying to get through our level II ultrasound with no problems. Ha. I asked 200 questions during that ultrasound. I was anxious to know the sex of the babies, but moreso I was anxious to know if everyones brain looked alright and their kidneys and their stomachs. And all of those were fine. Then the radiologist came in and I thought we were done. I will never forget the feeling when he turned and said "we think there is something you should know." Then he told us that he thought baby A had a clubfoot and that it could potentially be related to other genetic defects, like Down Syndrome or Spina bifida. I tried so hard not to cry. But by the time I was waiting for the lady to make my follow up appointment, I was in tears. I did not want to tell anyone and I just wanted the whole thing to go away. It did not help that we could not get a good view of baby A's heart so we had no idea if there were other genetic defects or not.
The following three weeks went by in a blur. It was getting close to Christmas and we had last minute things to do. I refused to speak with a genetic counselor. I had previously done that when we received genetic testing and it just scared me. We weren't going to terminate and I have a sister with Downs so I just wanted to concentrate on Christmas and making life as happy as I could for Gavin and for us.
Our follow-up appointment was December 24, 2009. I expected to hear that his foot was still affected and it was. The radiologist was cold and almost argumentative with Nick who is never really argumentative with anyone. The radiologist walked in and all he said was, yep, at your last appointment we told you your baby might have a clubfoot and I am telling you now, he definitely does. Nick was asking what made the diagnosis definitive and what made this appointment different than the last and the radiologist kept replying that now he definitely has a clubfoot. All he wanted to know was how they knew for sure now and did not know for sure 3 weeks prior. Needless to say, I wanted out of there fast. We were told the baby would need to have a fetal echocardiogram and it just so happened that the pediatric cardiologist that we were being referred to could see us that day. He did and both of the babies hearts looked great and normal. What a sigh of relief on Christmas eve!
Once Christmas was over, I could begin my frantic research about clubfoot. I first spoke with moms on the clubfoot support board on babycenter.com. I was told about a Yahoo group called nosrugeryforclubfoot, which I joined as well. Immediately, I found that moms and dads of children with clubfoot are so supportive. It made me feel better immediately and I was able to ask questions and get an idea of where to begin. I was informed that the current method of treatment was started by Dr. Ignacio Ponseti in Iowa and it consists of a series of casts that basically adjusts the babys foot a little a time until a satisfactory level of correction has been reached. These casts are done over a 9-12 week period and thereafter the childs feet are immediately placed in braces to make sure that the correction stays and a relapse does not occur. The braces are worn for 3-4 months for 23 hours per day and thereafter the baby is weened off the braces during his awake hours but will continue to wear the brace during sleep until 3-4 or potentially 5.
The cause of clubfoot is not really known although it is thought to be due to genetics or the environment. I initially thought that the environment meant occurrences that happened outside of the pregnancy- like taking medication or having had a drink prior to knowing I was pregnant, since both of these things took place and I am having a child with clubfoot. However, I have since been told by at least one pediatric orthopedist that environment refers to the womb and whether or not the baby has space or is pressed up against the mother's uterus. I have also learned that in boys that have one clubbed foot or unilateral clubfoot with no other genetic markers, the cause is usually not genetics. However bilateral clubfoot and clubfoot in girls more often means that it stems from genetics.
I learned that over the history of treatment for clubfoot there have been many trends. From casting to surgery. Dr. Ponseti is not the first doctor to cast. However, he is the first to cast in this method with this series of casts. Current trends seek to avoid surgery as much as possible and if necessary, parents hope only for an in-office tenotomy with no general anethesia. We hope the same.
Our first appointment with who we hope to be our pediatric orthopedist is Tuesday March 2. We will be attending our meet and greet with the doctor as well as seeing the clubfoot clinic at Hospital for Joint Disease in NYC. We will see all different stages of casting and braces on many different children and have the opportunity to meet and speak with the parents of these kids. I think it will be a learning experience and hopefully will ease some of our fears regarding what is coming. I will keep you posted!
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