For 1/2 of my 3rd pregnancy, I was operating under the assumption that my child did not have Down syndrome (incorrect) and did have bilateral clubfoot (correct).
My feelings the day of the ultrasound, as I wrote in the diagnosis story, were of grief and fear of the unknown. I didn’t go crazy doing research because Dr. Google can be scary, as evidenced by the images that come up in a “clubfoot” search (try it).
Instead, I concentrated on what the treatment would be like and dreaded the end of my pregnancy. When I complained about the results of the ultrasound, people would tell me, “Out of all the things that could be wrong with the baby, that’s the best one! It’s so easy to correct!” I beg to differ. The best things that can be wrong with a baby are the ones that resolve and disappear before the baby is born.
I was encouraged to read accounts of famous athletes who were born with clubfoot. The most inspiring to me were the stories of Mia Hamm, Kristi Yamaguchi, and Troy Aikman, especially knowing how successful they became in sports, and the fact that clubfoot didn’t stop them.
After Kyle was born, I bravely confirmed that his feet were cute, but definitely deformed. We learned that the treatment would begin when he was 3 weeks old, so we would “have time to enjoy him” before the casting began. With a nervous heart I packed up and drove to our children’s hospital one hot day in July.
We are lucky in many ways. We live within 30 minutes of an excellent children’s hospital with orthopedic doctors specially trained in the Ponseti method, the best and most widely-used method to treat clubfoot. Also, my mom was a teacher at the time, and Kyle was born in the summer. Thus, I never had to take a 3 and almost-5 year old to the ortho appointments.
I didn’t take a ton of “before” pictures, but here’s one:
This diagram from WikiEducator does a nice job of showing the directions of deformity in clubfoot:
The treatment for Kyle was first to correct the bilateral clubfoot with casting. Each week he had two new plaster casts put on. The plan was to continue with small adjustments weekly until the feet were completely corrected. Within 3 weeks there was a significant, visible difference. It is mind-boggling. The nice thing about babies is that they are wonderfully malleable, so the correction itself happens quickly.
Oddly enough, it worked to Kyle’s advantage that he has Down syndrome. Kids with Down syndrome have looser joints and muscles, so the tightness that usually accompanies clubfoot was lessened, significantly reducing our casting time.
One thing that surprised the doctor was Kyle’s strength. Kids with Down syndrome also have hypotonia, or low muscle tone. I asked the orthopedic doctor how Kyle could have low tone and still be so strong, and he explained how they are two different things. It meant that the doctor needed an extra pair of hands to successfully apply the casts.
At the end of 6 weeks, Kyle’s left foot was completely corrected. He needed one more week of casts for the right foot because it was tighter, and little did we know how that extra tightness would come back to haunt us 4 years down the road…
At this point in the treatment, most children require a tenotomy surgery followed by a 3 week cast to complete the correction. Again, because of Down syndrome, Kyle’s loose muscles allowed him to skip this step.
The casting went by so quickly and easily, it soon faded into memory. Unfortunately, those memories were replaced by extra-frustrating ones with the beginning of the “bar and shoes” phase. Without an orthotic to keep the feet turned out, the muscles and tendons would slowly pull the feet back in and down.
Enter the Ponseti bar and sandals.
I had been expecting the casts to be huge and get in the way of everything. Instead, they were small, unassuming, and fit into all of Kyle’s cute little sleeper pajamas. The bar and shoes, however, were wide and rigid. If I didn’t want to have to unbuckle the sandals at every diaper change, then footed sleepers were out of the question. And I had mostly footed sleepers from big brother’s hand-me-downs. So we had to buy a lot of new outfits with snaps and no feet.
For the first few months, Kyle had to wear the bar and shoes 23 hours a day. I had thought the casts were going to affect things like breastfeeding, but they did not get in the way. Once in the bar, it took a long time for me to figure out how to position him for breastfeeding. His feet were sticking straight out, unmovable, and 8 inches apart. Also, he was uncomfortable in the bar, and would cry more at night. He was never much of a crier, so it pained us to see him distressed and frustrated.
After a few months of that, we were able to slowly wean Kyle down to 16 hours a day in the bar and shoes. That amounted to nighttime, naps and a few waking hours. He was getting stronger, and started to push and move his feet and knees within the bar and sandals. (A few years later, I found out that with 2-3 adults holding his arm perfectly still, Kyle could rotate his elbow joint within his arm.) I think that’s what he would do with his knees, and it started to take a toll in the form of joint cracking and popping with his every move. I shudder to think of the sound today!
The next course of action was to replace the Ponseti bar with a Dobbs bar and see if it helped the popping. It was a hinged bar that allowed independent movement of his knees. I still have no idea why they don’t start out with this type of bar, but I think it has something to do with insurance companies. One day in the Dobbs bar and the joint popping sounds ceased completely.
One thing I found in my early research was that clubfoot can cause a delay in walking. I was prepared for that, but when I found out Kyle also had Down syndrome, that delay became a much more daunting possibility. The average age for walking unassisted in children with Down syndrome is 24 months. Kyle started pulling to stand at 14 months. I wrote in my journal, “I wonder how long until he’s walking?” He walked at 27 months, and it was a glorious sight.
We continued with the bar and shoes at night until Kyle was three years old. At that point his doctor said once he started to resist the brace at night, we could phase it out. So the next night, we did. Just kidding, although we felt like it. We begrudgingly put the bar on for a few more months until we gave up on it completely. If only that was the end of the story…
(Continued in: When Clubfoot Comes Back)