Navigating a clubfoot diagnosis in Luxembourg 

When I went for my 20 week scan in February 2020, the doctor started talking about how one of my baby’s feet was turned the wrong way and how he would need casting once he was born. I had absolutely no idea what he was talking about but soon learned that my baby had clubfoot. 
The rest of the visit went by in a blur and I left with an appointment to see an orthopedic surgeon at the Kannerklinik in 2 months' time. This seemed like a lifetime to wait when words like "deformity" are mentioned with regards to your baby.

Between February and April 2020 Luxembourg was in lockdown because of Covid. There I was, heavily pregnant, having just received this diagnosis of something I had never heard of, and I couldn't meet up with friends to talk about it. No one I knew had heard of clubfoot either, so I took to the various Facebook groups to ask if anyone in Luxembourg had any experience to share with me. No one responded.

I eventually managed to find a "Clubfoot Moms" group in the States which was helpful, but we ended up having a very different (and much better) experience here in Luxembourg.

What is clubfoot? 

Doing a quick Google search can make your heart stop momentarily when terms like "birth defect" and "congenital deformity" pop up. However, it is not as scary as it sounds for those of us in the developed world with access to good healthcare.

According to the Ponseti International Association, an organization dedicated to training and educating healthcare providers on the treatment process, clubfoot, also known as talipes equinovarus, is a treatable birth defect that affects around 150,000-200,000 children annually.

The condition manifests during fetal development, causing the foot to turn inward and downwards. It is the most common congenital deformity and is not painful for newborns.  One or both feet can be affected, with mobility of the feet ranging from relatively flexible to rigid.

My first thought after digesting the diagnosis was, “Did I do something to cause this?” I had been on various anti-nausea medications to treat hyperemesis (a.k.a. Princess Kate's illness during pregnancy) and I could not help but wonder if that was why my baby had clubfoot.

It is not known what causes clubfoot so there is no point beating yourself up over the if's and why's.

Here in Luxembourg, specialists at the Kannerklinik use the tried and tested Ponseti method to treat clubfoot. This treatment starts right away: when my son was one week old he got his first cast. He received a new cast every week for the next four weeks, a process aimed at correcting the position of his clubfoot.

After the last cast came off, we went straight into daily physiotherapy at the Kannerklinik. Most babies with clubfoot require a tenotomy after casting - this is a small surgical procedure to stretch the Achilles tendon. We were lucky that my son, who earned the nickname ‘spaghetti legs’, is very flexible and didn't need any surgery.

Another thing that happens once the last cast comes off is the start of 23-hour-a-day "boots and bar" wear to maintain the correction of the clubfoot.

This part is tough. "Boots and bar" is a special brace system used for treating clubfoot. Imagine shoes (boots) connected by a metal bar. The boots go on the baby's feet, and the bar helps keep the foot or feet in the corrected position.

As time goes on you decrease the number of hours spent in the boots until eventually you can take  take them off forever. My son was two when we said goodbye to the boots, but some children have to wear them for longer.

Aside from the usual stress and exhaustion that come with having a new baby, the looks and comments from strangers were an unexpected added layer to an already difficult process. It's not your responsibility to put manners on people, but the French term for clubfoot is "pied bot" if you feel like being informative!

Clubfoot is very fixable and your child can expect to have a normal childhood, fully capable of doing all the things other children do. If, like my son, your baby has bilateral clubfoot, meaning only one foot, the affected foot may be slightly smaller than the other one. So far, the difference in my son's feet is negligible and he does not need different sized shoes. In addition, the muscles in the affected leg may be slightly smaller and weaker.

This just means you have to be diligent about going to physiotherapy and working on muscle strengthening and balance. While you will always be able to tell which foot was the clubfoot, no one else will.

I don't know of any other country that recommends such intense physiotherapy. At first it was a daunting prospect going to the hospital every single day, especially during Covid. But when I look at my son running, jumping, and generally being a terror like any other preschooler, I am very grateful for the care and attention he received, and continues to receive here in Luxembourg.

The casts, physiotherapy, and boots and bar are completely covered by the CNS. All we paid for was our portion of the doctor visits when we had follow-up appointments at the hospital, roughly twice a year.

Some helpful resources: 

http://www.ponseti.info/what-is-clubfoot.html  

https://www.mayoclinic.org/diseases-conditions/clubfoot/symptoms-causes/syc-20350860