Welcome! I’ve intended to write about our experience with having a child born with clubfoot since our son Eli was born and now he is two years old! This post is an overview of our experience. I’m happy to answer questions and I will continue to add posts with more specific information, so be sure to add your email to follow.
20 Week Ultrasound
This was my first pregnancy and my husband and I were anxious for our ultrasound to see our baby and find out that we were having a boy. We left with our ultrasound pictures and love in our hearts! The next day, I received a phone call from the nurse at my obstetrician’s office asking me to come to the office to discuss the ultrasound. My husband and I waited in the office almost silently with racing hearts until they called us back. The doctor came in to report that our son has clubfoot…words that I recall loud and clear as the doctor was speaking…other abnormalities, high risk pregnancy, additional testing. We had never heard of clubfoot before so when the doctor stepped out I instantly grabbed my phone and google searched…the images and information that popped up made us fearful. These same images now, I love and see as incredibly beautiful.
I had to schedule an appointment with an Antenatal Testing Center. Now it was time for what I call the “waiting game” – calling for an appointment, waiting for insurance approval, doctor was all booked, referred to another office, and then finally getting the appointment and then more waiting. Waiting was horrible because during this time I continued to do research and I understood why my completely normal pregnancy escalated to a high risk pregnancy, not because of clubfoot, but because of other abnormalities that can coincide with clubfoot. We went for another ultrasound and we spoke with a doctor about the results. We were told our baby would be born with a right clubfoot and that everything else was showing normal as far as they could tell. We were offered an amniocentesis and we were advised an AFT would provide more accurate results but we chose not to take that route. Again, we left the appointment nervous but with an indescribable amount of love in our hearts.
The next step was to line up a doctor to treat Eli when he was born. We went to the recommended orthopedic for a consultation and although she was knowledgeable, the overall office environment left us uneasy. I did some research on my own and we ended up scheduling a consultation at Children’s Hospital with a pediatric orthopaedic surgeon. We left the consultation feeling relieved that we knew this orthopaedic was the right doctor to treat our baby. He explained to us that he follows the Ponseti method of treatment, which we were familiar with through our own research. I definitely recommend finding the “right fit” doctor because it provided a huge sense of relief and the child-centered atmosphere that Children’s Hospital provides gave us a secure feeling.
Our son was born as planned and we called to schedule Eli’s first casting 1.5 weeks after his birth. The doctor applied a full leg plaster cast and Eli did wonderfully through the procedure. The doctor cut the end of the cast so we could see his toes and monitor his circulation. We scheduled appointments to return every week for a new cast. When we would arrive, a tech used a small machine to remove the old cast and then the doctor would manipulate the foot and apply a new cast. Eli’s leg became increasingly sensitive week to week with the casting. After 6 casts, the doctor recommended a tenotomy (Achilles tendon release).
The next step was the Achilles tenotomy when Eli was about 7 weeks old. Eli’s doctor recommended this procedure since the tendon was very tight but this surgery is not required in all clubfoot cases. Eli’s tenotomy was performed under anesthesia and it required a small incision in the heel to release the tendon so it can reattached with more flexibility. He was put back in one final cast which he wore for three weeks straight. He was released to go home this same day after he recovered from the anesthesia.
Ponseti Boots and Bar
After wearing his final cast for three weeks, he got his first pair of Ponseti shoes and brace. He had to wear the brace for 23 hours a day which gave us one hour a day for a bath and a little bit of stretching. We continued the 23 hours a day brace wear for three months. The first night with the boots and bar was emotionally draining for me as Eli was very uncomfortable. He would cry every time he tried to adjust and just seemed unsure how to move. Amazingly though, we worked with him the next day and he showed remarkable improvement in comfort level. We placed Eli in a bouncy seat and I made up a fun song to sing while I lifted the bar, “up and down, up and down, up and down and all around.” Within a couple of days, he was kicking with the brace and was a happier baby than in the cast but he always enjoyed his one hour of freedom.
About three months later, we went for his follow-up and he was ready for part-time boots and bar wear which was reduced to 12-14 hours per day, recommended at naps and bedtime.
My son still wears his Ponseti boots and bar as recommended for 12-14 hours a day. We put them on as part of a nightly routine. He continues to see his doctor every 6 months for routine visits and the doctor is very happy with his progress. We have never missed a night of putting his shoes on and we compensate for the hours if for some reason we have to remove the shoes early or put them on late. As far as we know, he will continue wearing his brace until he is 4 years old. He is a very active two year old now and clubfoot has not stopped or hindered him. He even manages to get around with his brace on and we have learned to watch out because it’s painful if he comes across our toes! Please send me a message or leave a comment about your questions regarding clubfoot.
With Love, Erin