My Favorite Resources and Information about Clubfoot

I believe that information is power. Whenever I'm interested in anything, I research the heck out of it. Tiebreaker's diagnosis was no different. In the weeks following the initial ultrasound, I spent most of my free time doing scouring the Internet for information. I also had a lengthy e-mail correspondence with an online friend whose daughter has bilateral clubfoot. Here are the most helpful resources I've found.

Blogroll

On the right, I have a blogroll of other blogs of parents on the clubfoot journey. If you have such a blog and would like to be added, please leave a comment or e-mail me!

Books

I couldn't find many books about clubfoot written for the layperson (i.e., a non-medical professional). The Parents' Guide to Clubfoot by Betsy Miller is one of the very few available.

It was written in 2012 so the information it contains is very current, and it's available in paperback, for Kindle, or for Nook.

I purchased the paperback version because I only have the Kindle app for iPhone, and I thought any pictures or diagrams would be more easily visible in the paperback as opposed to my small iPhone screen. Also, there's a section at the back that contains a book for kids about clubfoot, and I thought it would be easier to read it to them from the actual book. If you have an iPad or an actual Kindle or Nook, though, I think the electronic version would be just as good.

It is an excellent resource, and I highly recommend it for any parent of a child with clubfoot or even for anyone who wants to learn more about the condition. It has helped me feel more prepared for our baby's treatment, and contains many success stories from other parents. She also has a chapter about finding a Ponseti-trained care provider, "red flags" to look for when interviewing care providers, and information about online support groups that will be helpful for any parent whose child's clubfoot was diagnosed prenatally, as Tiebreaker's was.

PDFs

The staff at Phoenix Children's Hospital Center for Pediatric Orthopedics, where Tiebreaker will be treated, gave me a folder with several concise, informational PDFs about clubfoot, and I was pleased to see they were also available at their website for download.

Support Groups Online

The best online support group I've found is the Yahoo! Group nosurgery4clubfoot (this group is also highly recommended in Betsy Miller's book). So far, it's been a valuable source of information, and it's great to be able to chat with other parents who are on the clubfoot treatment journey. 

Facebook group - Clubfoot Journey for Mommies and Babies

Facebook group - Clubfoot is Treatable 

Videos

This page on Clubfeet.net contains six YouTube videos about clubfoot. The first four comprise a complete documentary about clubfoot and the Ponseti method of treatment -- I found these very informational and helpful. The last two videos are of various medical professionals discussion clubfoot and its treatment.

This video features the doctor (and the facility) who will be treating Tiebreaker's clubfoot! I met him for a consultation appointment on August 8 and was very pleased by his knowledge and his manner.

This is another video about the treatment of clubfoot by Phoenix Children's Hospital, the facility where we'll be taking Tiebreaker for treatment, and again featuring his or her doctor. It also contains interviews with several parents who had their children's clubfoot treated there.

This video was created for the University of Iowa Department of Orthopedics, where Dr. Ignacio Ponseti (creator of the Ponseti method of treatment) practiced, for the purpose of promoting Dr. Ponseti's work. This a great peek into the history of Dr. Ponseti's method and his success with it. It was made while Dr. Ponseti was still alive, and the director was able to meet with him prior to his passing.

Websites

There are a ton of websites relating to clubfoot out there, but these are my favorites:

Ponseti International - a must-visit for any parent. The first step in the journey to find a care provider should be their list of Ponseti-certified physicians. It's important to find a doctor who strictly follows the Ponseti protocol (and who, preferably, learned the method from Dr. Ponseti himself and/or at the University of Iowa).

MD Orthopedics - the go-to site for the "boots and bars" brace that all kids with clubfoot wear after the casting process is completed.

Footnote Film Project - there's a documentary in the works about the treatment of clubfoot; they're currently fundraising to film internationally. Looks like a neat project!

Tony Spineto, Clubfoot Triathlete -  Tony is an endurance athlete who was born with bilateral clubfoot. He seeks to encourage and educate children with clubfoot and their parents, and he's currently writing a book about his experiences.

To Parents of Children Born with Clubfoot - a message from Dr. Ponseti, hosted at the University of Iowa Children's Hospital site, discussing why it's so important to get a child's clubfoot treated properly.

The Saga Begins

Our clubfoot journey began on May 17, 2013, when I was 19w3d pregnant with our fifth child. I went to my OB/GYN's office for my routine 20-week anatomy ultrasound, along with my husband and my two oldest children. (We did not find out his/her gender, and refer to the baby as "Tiebreaker," since s/he has two brothers and two sisters eagerly awaiting his/her arrival.)

Here are a few of the pictures we received that day:

Profile pic

His/her sweet little face in 3D.

A picture that clearly shows one of his/her club feet, although during the u/s itself I didn't notice. 

I thought everything went well. In hindsight, when the tech measured the baby's femur he didn't say much and changed the subject (I think he asked me if I was hoping for a boy or a girl), but at the time I didn't notice.

He stated Baby was measuring right on target, printed out some pictures for us, and mentioned he'd need a few minutes to prepare the report before giving it to my OB. All fine, all routine. 

When we were called back into my OB's office, it did seem to take a little longer than usual for him to come in, but I dismissed that as well. A busy day for him, I thought. Maybe he'd had to deliver a baby or two that morning and was behind schedule as a result.

When Dr. N. did come in, it wasn't with the big smile I was accustomed to seeing from him. He glanced at the kids, who were waiting in the corner of the room with Collin, and hesitated for just an instant. Then he sat down and looked right at me.

"We need to talk about the ultrasound," he said.

I didn't understand why he looked so serious. Surely everything was fine. Wasn't he here to tell me that everything looked great, as he had twice before, during my pregnancies with Violet and Gabriel (my two youngest children)?

He looked me in the eye, making sure he had my attention. "The baby has clubbed feet."

My first reaction was denial. No. Not my baby. Everything had looked fine. The tech hadn't indicated anything was amiss. He was wrong. He had to be wrong. 

"What?" I stammered.

As Dr. N explained that the results of the ultrasound showed bilateral club feet, my first thought was of my friend Monica and her baby Roslyn. And now Dr. N was telling me that the same thing had happened to my baby. I was having trouble wrapping my mind around it. I'd had four physically healthy kids and had expected that #5 would be equally healthy. But s/he wasn't.

We talked about what the treatment would involve, and my mind was in a whirl. Casts. Braces. Possible surgery if the baby was in the 5% for whom casting and braces didn't work. Dr. N inquired if we'd found out the baby's gender, and we said no. He said, "I was just curious, as boys are twice as likely to have club foot than girls."

We spent the last few minutes of the appointment talking about my health -- my recent bout with bronchitis in particular -- but I was having trouble focusing on me.

The next few weeks were consumed by research. I read every piece of material I could find about clubfoot, watched YouTube videos, and ordered a book off of Amazon. I called the only Ponseti-certified pediatric orthopedist in the Phoenix metro area and scheduled a consultation appointment for early August (more on that later.)

At 22 weeks pregnant, I had a Level II ultrasound at a perinatalogist's practice to confirm the diagnosis and also to check for any other issues (sometimes, clubfoot can be an indication of a larger problem such as spina bifida). Thankfully, everything else looked great and the clubfoot was the only anomaly the tech could see. These are the pictures that confirmed the diagnosis:

While I did experience some disappointment that the diagnosis was confirmed (I'd nursed a tiny hope that, perhaps, the findings of the first ultrasound had been some weird fluke and the baby's feet were not clubbed), I was relieved to know that there were no larger issues or syndromes at play.

Now that several months have passed since the baby's diagnosis, I'm feeling more confident about the journey ahead. I know it won't be easy, but nothing worth doing ever is. In my next post I'll share some of the resources and information that have helped me learn more than I ever thought I'd know about clubfoot.