“It’s amazing how the universe conspires to make things happen.

Benji with clubfootOur story begins in Belize where on May 3, 2021, after an emergency c-section our son Benji was diagnosed with a unilateral left clubfoot (LCF) at birth. This was our first child and there was nobody in our immediate family with clubfoot. So, we trusted when they explained to us that his case was not a severe one and could be easily treated using the ‘Ponseti Method’. Everything we read suggested this was the common course of treatment and we felt nervous, yet confident going forward.

Benji was fitted with his first cast just shy of one month old. On paper it sounded easy, but several slipped and replaced casts later, we began to find the experience both frustrating and worrisome. When he was about seven and a half weeks old a tenotomy was performed and a cast was applied for three weeks. When it was removed the doctor felt the foot still had not been fully corrected, so he applied two more casts while we started looking into getting his boots and bar. With COVID, shipping anything into the country had become difficult, so the doctor decided to keep him in casts until the boots arrived suggesting to us that this was also a suitable and potentially cheaper alternative to the boots and bar if we were unable to get one. Nowhere in the literature suggested this was an option, so we decided to continue looking into getting him his boots and bar. In the meantime, when yet another cast slipped, he replaced it with a below-the-knee cast and told us if this one slipped a little it would be fine since the foot was now corrected.

We now know that that was terrible advice, as well as below the knee casts are not suited for infants, and not a part of the Ponseti method. When Benji’s boots arrived, and his final cast was removed, I was horrified. His foot looked deformed. I remember asking the doctor, “why does his foot look bunched up like that?” That is the only way I could think to describe it. He said to give it time but stated the feet were corrected and ready to proceed to boots and bar.

Ponseti Method of Treatment

This felt wrong. I thought, “how can these feet be ready?? This can’t be right!”

So, we tried to get a second opinion and we met with a nice doctor about two hours away in Belize City that also insisted not to worry, that the foot was fine, and to give it time. He showed us again how to strap his feet into the boots and bar and we left feeling slightly better about it.

But it continued to bother me. “How can his foot look like this and it be, okay?” It took some time, but this is what I now know. Slipped casts can happen, but consistently slipping casts are a red flag and can be a sign that your child’s foot is not fully corrected. My child’s foot had become complex because of improper and slipped casting. How did I find out? Research. I got desperate. His foot did not look right, no matter what the second doctor said. I found an article by Dr. Ponseti from the University of Iowa, about the idiopathic atypical/complex clubfoot and a modified treatment method. The pictures looked just like Benji’s foot.

 

When I could not find any local clubfoot support groups or resources, I decided to join a primarily US based one. I took pictures of Benji’s feet and shared them to the group with a plea to the parents, simply asking them whether they thought the foot was complex. They confirmed it.

I was furious.

Then I was sad.

Then for weeks I just sat between those two emotions while we tried to find a local doctor that would treat his foot that I now suspected had been made complex. We found a third doctor who advised us that it was complex clubfoot, but she did not have the experience working on a complex case.

Previous cast vs Morcuende castIt was through that clubfoot support page that I first heard about Dr. Morcuende from the University of Iowa Ponseti Clubfoot Clinic. Based on the comments from other parents in the support group I discovered that he is the doctor many parents turn to when their child’s case becomes complex. But there was COVID to consider, figuring out where to stay for weeks on end while Benji got castings. There were these things and more, but after more weeks of trying to find a local doctor to treat him had passed I finally wrote an email to Dr. Morcuende with pictures of Benji’s foot and the details of his treatment from birth until then. Embarrassed that I may have inundated him with too much information at once, it took a day but when he responded he confirmed that Benji was a complex case and he graciously agreed to treat him.

What a relief it was to finally hear someone say what I felt in my heart to be true, but also to have found a doctor with both the willingness and skills to treat Benji’s complex clubfoot. It took the better part of two days, two flights and crossing what worked out to be 2,502 miles to get to Iowa City, Iowa, and the University of Iowa Ponseti Clubfoot Clinic. We were lucky enough to stay at the Ronald McDonald House, where there was a scrapbook dedicated to Dr. Morcuende and Dr. Ponseti, filled with stories of children whose lives (and feet) were treated by both amazing doctors. The night before his appointment I spent the evening reading each of the entries and just hoping ours would be one that we could add as well.

Fast forward to today and Benji’s foot looks remarkably well. While Dr. Morcuende initially thought it would take three to four casts to correct it, along with a second tenotomy, turns out his foot was fully corrected in two casts, and no tenotomy was required. A final cast was placed on December 6 in Iowa and removed on December 20 here in Belize. At that point we transitioned to the next part of his treatment, the boots and bar. Clubfoot Solutions, the non-profit organization donated new Iowa Clubfoot Braces to us for Benji to use during his bracing treatment. We are extremely grateful to Dr. Morcuende and Clubfoot Solutions for all they have done for our son.

Corrected clubfoot

I hope Benji’s story finds a family that needs to know that even if something does go wrong during your little one’s treatment, that with time and experienced hands, your child’s feet can still be corrected. I say this because I now know that there is a whole community of parents like us that are going through this process. Angry, sad, and worried that their children’s feet may have already suffered too great a harm to fully recover. Or worried that even if it can be corrected in the short term that they will always walk or run with some degree of pain or require surgery in the years to come.

Our advice to parents would be do as much research as possible going into treatment, and do not be afraid to ask questions, become your little one’s advocate because his little feet will be all the better for it. Online support groups are helpful! No matter where they are located. All the best to you and your little Clubfoot Cuties.”

– With love, Lauren, Thomas and Benji