What should you expect when a baby is born with clubfoot? What do you need to know? What does treatment entail and how quickly do you need to act? (And most importantly, you should know: You will get through this and your baby will be fine!)
It all started minutes after birth when a nurse came and told me that my son was born with clubfoot. I was unaware what clubfoot was–was pretty much in a very postpartum haze–so I didn’t think anything of it.
Clubfoot is a birth defect where the foot (or feet) is twisted inwards and upwards.The most widely used method worldwide to treat clubfoot is called the ponseti method which involves serial casting every week or so for 5-8 weeks to reshape the foot. The casting is usually started when the child is about a week or two old.
We started treatment late–that is not recommended. When we called our pediatrician after my son was born to make an appointment, they scheduled it for when we would be 2 weeks old–even though we had said he has clubfoot. At that appointment, we were referred to a local pediatric orthopedist–and had another appointment another 2 weeks away, at 4 weeks old. When we made it, we had insurance complications so had to push off the appointment for another few weeks. My son’s treatment to correct his clubfoot started at almost 8 weeks.
Had I been given the right information and knew how important it was to be treated right away–I would have made sure that my son was seen and that the paperwork was taken care of much, much quicker!
When we finally got to our first treatment appointment, the doctor put a cast on my child–and I was completely thrown off! The lack of information given to us was overwhelming–I hadn’t known what to expect.
So I started to do my own research and spread awareness.
Part One: The 6 Casts
My son had 6 weekly casts. Each week, we had to go to the doctor and he would manipulate the foot with every cast to shape it slowly to the right position.
(A tenotomy of the achilles tendon is sometimes done at this point. It’s a small in-office procedure to release the achilles tendon but our doctor did not think my son needed it.)
Part Two: Boots and Bar (aka bnb or b&b)
The second part of the treatment is the boots and bar. It is a 3 buckled boot that goes on both feet (even if only one foot is clubfoot) with a bar connecting them. This is to keep the clubfoot turned out so it doesn’t regress and start turning inwards. This is probably the hardest part in the beginning. The parents and child have to learn to adjust to the new shoes. The child will be fitted for the boots and then the doctor will show you how to tighten them to your child’s foot. During the first few weeks, it may be hard on the child as well as hard on you, the parent, to adjust to this, but the adjustment WILL happen! Have patience and a support group. The child will usually wear the bnb (boots and bar) for 23 hours a day but as they get older, the time they wear it will shorten until they only have to wear them at naps/bedtime (this usually happens at around the crawling stage). Most children will have to wear them until 4-5 years old at night time.
My son wore his boots and bar until he was 4 years old–this was when our orthopedist cleared him to stop. We still have to go in for checkups yearly and to keep doing stretches to prevent a relapse, but his foot looks great!
It can be overwhelming at first but it doesn’t have to stay like that. There is a support system waiting for any new mother of a clubfoot cutie.
The reason I am so open about our clubfoot journey is because I am seeing more and more parents come to me totally lost. The pediatricians and orthopedics may be good at their jobs–but it takes someone with actual experience to guide other mothers on what to expect.
About Rocky’s Clubfoot Support Group:
My goal is to spread awareness and to be there for others. I started a support chat on WhatsApp and texting for mothers of clubfoot kids and I also have a gemach for the boots and bar (as some insurances won’t cover them completely). Our contact information is clubfootgemach@gmail.com. You can email us any questions as well as your information if you would be interested in joining our support chats.
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