Talipes/Club foot page - DP's story

         

(lots of  photos below the text to see what to expect during the course of treatment)

Feel free to contact me if you have comments or futher questions: Joyce.Slavik@gmail.com

Finding out

During an early ultrasound with my second son, I noticed that the technician looked concerned about something. She kept going back to the same place. She finally said that she had some concerns about how the right foot was turned. I didn't think too much of it but I started to research club foot. It's not something I knew much about but I knew what the term was. It did not run in either my husband's family or mine. We were sent for a follow-up visit at another hospital where they spent more time reviewing the feet. At that visit, the technician confirmed that it did indeed look like there was one club foot for sure, possibly two.  During this time, I felt sad and worried. I also did more serious research. I was also worried because during none of the ultrasounds did the technicians get a good look at our baby's spine. I discovered that there is a small correlation between club foot and spina bifida. My baby was moving a lot though and  I had done a good job getting folic acid even before getting pregnant. Not a big concern but, as a pregnant woman, of course you need things to worry about ;-). At the time I was pregnant, I was living outside of Amsterdam in the Netherlands. Although I'd had a son three years earlier in Amsterdam, I still wasn't totally comfortable with the medical system nor the language. During my research, however, I found a treatment method that sounded really good. The Ponseti Method. The benefits were no surgery, a long history of use, and no  scarring and long term pain. I found out it was developed by a doctor who worked at the University of Iowa. I found a couple of online parents groups and was very impressed not only with the results but moreso with the knowledge and support of the parents in those groups. Parent advocates are the best knowledge base for something like this. I became quite knowledgeable on my own about club foot and the Ponseti Method in particular. I was quite impressed by Dr. Ponseti and his commitment to children. He even answered my emails when I had concerns and questions. I knew it was the right method.

Initial Treatment

The problem was that I could not find a single doctor in the Netherlands who treated using the Ponseti Method. The surgery rate in the Netherlands was 70%. The Dutch orthopedic community had settled on a treatment method and it was difficult to follow anything different. Finally, I somehow stumbled upon a post by a Dutch woman (living in France) who mentioned a possible Ponseti doctor in Henglo. I ended up finding the one doctor in Holland who treated using the Ponseti Method! I called him and was given a bit of a run around. I was distraught as my due date approached. I enlisted my Dutch husband to break through for me and pave the way for me to speak with Dr. Schuppers. I went through the checklist I'd found on the nosurgeryforclubfoot Yahoo list to ensure that he practiced the method fully. I had already read enough to know that some doctors claim to use the Ponseti Method but in fact, use a modified - and less effective - version. I was confident after speaking with Dr. Schuppers I'd found the right doctor. He suggested that we call after the baby was born and schedule the first casting. DP was born at de Heel Ziekenhuis on April 14, 2006 by planned c-section. Like his brother, he was wedged in my heart -shaped uterus in a transverse position. Up to birth, I was still hopeful that perhaps his foot position was temporary and due to his position in utero.  We discussed our plans multiple times with the medical staff at de Heel and stated that we would be traveling to Hengelo for the clubfoot treatment. I can't say anyone gave us a difficult time about that but it was certainly not the norm to be this proactive in one's own medical treatment. I wasn't very happy to be laying on the operating table after DP came out and being asked at that time about the doctors there starting a casting treatment. I was stern about sticking with our plan. Four days after his birth, we made the trip to Hengelo for the first casting. For me it was quite difficult. It was about a 80 minute drive and I was still in a lot of pain. I needed to be there to advocate however and also because I was breastfeeding. Dr. Ponseti had assured me that waiting several days after birth would be okay to start treatment. He said bonding was more important at that time. I really appreciated that sense of calm. Dr. Schuppers said that DP's right foot was a mild/normal version of club foot and that the left foot was normal. He didn't seem that comfortable speaking English and my Dutch wasn't very good but between all of us - and Wouter translating as necessary - we communicated very well.  DP had 5 casts, changed weekly. The ritual was to have the cast removed at the hospital, go to the maternity ward so we could bathe DP, back for the next cast, then the hospital cafeteria so IP (our then 3-year old very proud big brother) could have his reward of apple juice as a treat for the journey :-). After the fifth cast, DP had the very routine tenotomy as expected. Then a 3 week cast followed by the start of the boots/bar. The casts were difficult but doable. DP slept fine, he could wear normal onesies, and we could even put him in a Baby Bjorn. One thing I want to comment on is when the first cast was being cut off, DP was very upset. We just assumed it was uncomfortable but afterwards I saw a red line down his leg where the assistant was cutting the cast off! Ask questions and speak up if something doesn't seem right to you! 

The Brace: Parents' turn

I thought it would be so easy once the casts were done. That is when it got tough though. I sobbed the first day trying to get the boots on properly, we fretted over the weird shape his ankle was taking on, and worried how we'd ever handle it. The good news is that phase did not last long. We both got good at putting on the boots and bar. Blisters fortunately never were a problem. The misshapen ankle was just temporarily displaced water (although that took an additional trip to the hospital in Hengelo and yet more apple juice rewards for IP :-)).  Below is DP's foot story in pictures since I think that helps see what you might expect if you have a new baby with talipes/club foot. As the bar use decreased, it definitely got easier. Most people that knew DP either forgot or didn't even realize that he had club foot. I would get frustrated at people who made a big deal out of his foot - either making snide comments about us breaking our child's leg as they passed us by during the casting phase or people introducing DP to others as a defect rather than a baby. Those things made me angry but I knew that stuff was coming based on what I'd read other people experience. So below there are pictures of DP's face and his family. Because he's not a defect. He's a person. He's hilarious, he's smart, he's mischievous. And he's my precious boy. I hope that hearing our story and reviewing the pictures helps other parents going through the same thing. Feel free to feel angry sad when you first find out that your baby isn't 'perfect'. Then get to work doing some research and be the best advocate you can be for your child. If you go the Ponseti route (and I truly recommend this completely), do not hesitate to ask your doctor questions or switch doctors if you feel like something isn't right. The shoes/bar should not hurt your child if the casting has been done properly. The tenotomy is very standard procedure with Ponseti patients. It's an outpatient procedure that takes minutes. It's likely to be more traumatic for you that your child :-). Children born with unilateral talipes normally have a smaller calf on the talipes foot and a slightly smaller foot than the non talipes foot. DP's calf difference is very hard to tell at this point. His feet are not different enough to warrant different sized shoes although we have had different sized boots with the brace. He wears regular shoes for walking and moving about. 

No More Brace!

April 2010: DP is four years old, the recommended age at which bracing can end. He's been waiting for this for months. Dr. Lemke gives the okay. I'm a bit nervous but am ready to stop. 

September 2010: We've just had the six-month follow-up after DP has stopped wearing the brace completely. Awesome news so far. Still excellent mobility, no sign of relapse. We will see Dr. Lemke next year unless we see any problems and then we'll be done!!! Some notes from this visit: The turnout of the clubfoot is slightly less than the non clubfoot but well within normal range. Not having gone through surgery, the chances of pain and repeat surgeries doesn't exist.  I would not have done anything different regarding DP's  treatment. Hurray!

I always get a little teary eyed after the visits and am so thankful how things have worked out. Dr. Ponseti is a real hero and is forever in my debt. The Ponseti Method continues to grow as the standard treatment. I'd completely recommend the two orthopedic doctors we saw: Dr. Schuppers in Hengelo (the Netherlands) did a wonderful job through the casting and DP's first  1.5 years. Dr. Lemke in Chicagoland (USA) took over for monitoring. Although she didn't do the initial correction, I wouldn't hesitate recommending her. I've been so thankful and appreciative of both doctors work! 

August 2011:  Annual follow up with Dr. Lemke. We have been released!!!!!!! His foot is still great. Dr. Lemke had him stand on each foot and go up on his tippy toes, something that not all club foot kids can do. Dylan was able to do it on both feet. She said we do not need to go back unless we see any problems. It has been a journey and, now after all this time, we almost take it for granted how great Dylan's foot is. My top advice tips:

  1. Find a doctor that uses the Ponseti method. She or he doesn't need to be certified but ask the questions to make sure they follow the method. Surgery should be a very last resort.
  2. Always use the brace/shoes. Be consistent and stay with it until recommendations say it's okay to stop. Current recommendation is nighttime wear until 4 years old.
  3. Be easy on yourself. Nothing you did while pregnant caused this condition. The best you can do is keep up with the research and get the best treatment possible. Ask questions or switch doctors if something doesn't seem right.

Dr. Ponseti (1914-2009)

What a tremendous man! He spent his life helping people and children in particular avoid the pain of club foot. He died October 18, 2009 at age 95 just before he was to present at a ClubFoot seminar. He has my humble and very  heartfelt gratitude.

http://www.orthosupersite.com/view.asp?rID=44839

Great  resources

http://www.semeda.de/25-1-alfa-flex.html (the shoes/brace DP uses)

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/ (official site for Dr. Ponseti's treatment)

http://groups.yahoo.com/group/nosurgery4clubfoot/ (online support group of adults born with talipes and parents of children born with talipes; awesome group with incredible knowledge and support; this is a pro Ponseti Method group)

 

Photos

DP is born! I didn't really notice his foot until later in the pictures.

Treatment began 4 days after. This is early after the casting had started. A dramatic difference right away.

 

We were able to bathe DP in the maternity ward in between the 5 weekly casts.

The casts manipulated his foot gently a little more each time. He was never too bothered by the casts. 
 

 

As his proud big brother looks on. I worried about what clothes we could use. Normally onsies were fine. Just get them a little bit bigger.
He really did like the baths in between the casts. Hard to tell here ;-).

 

After the boots/brace started, we were concerned over what appeared to be swelling around the ankle. We were assured (after a long extra hospital trip) that this swelling is both normal and temporary. 

 

This shows a sort of crease by the ankle/foot. This is just extra skin from the manipulations. Also nothing to worry about.

 

 

 

 

 

 

 

The brace we use is from a German based company. It's called Alfa-Flex from Semeda. Highly recommended. Easy to separate the shoes from the brace. Easy to get the shoes on and off (once you figure it out the first time!). Never had problems with blisters. We use the traction type socks (can be found at Target, Baby Gap) and usually fold  the top of the sock over the ankle of the boot. Seems to work to keep the boots on. Early on , it was easiest to put DP in his boots while having him sitting on my lap. Now that he's older, he usually sits on his own facing me while I put them on. 

His foot looked really great pretty quickly. The lines and redness are from just having the cast come off.

 

 

 

You can breastfeed with the cast and with the braces. Basically I flipped him all the way over facing me. He actually sleeps even now on his side with his feet/brace up in the air so the angle didn't bother him.

He's not just a 'foot' :-).

 

   
Tummy time. Not very liked. DP actually turned over for the first time at about 4 months - with the brace on. You can see here the 'swollen' looking ankle. That's gone now that he only wears the brace at night.

 

Difficult to see here which foot is the talipes foot.
Don't let the brace or casts stop you from doing things. Accept that you'll get some rude or insensitive comments knowing that you're doing a great thing for your child.

 

Thunder thighs here :-). About 4 months. Can't yet see any real difference between the calves.

 

I suppose the brace fit in with the Frankenbaby outfit but really it's a second hand outfit I got that fit :-).

 

Sitting up was no problem. The brace probably helped him to balance.

 

First birthday. By this time, there was already a good deal of freedom from the brace.

Standing. DP was walking at 16 months. I don't believe the brace hindered that. His brother walked at 17 months so he was already ahead of that :-).

 

 

We used the Baby Bjorn with the casts, the brace, and without. I would keep the brace on while in the car but when his legs got too long, we stopped that. It didn't look comfortable with that extra weight.

Dude's flexible. He still sits like this.

Just starting to walk! Good news anyway but certainly good for kids with talipes. It's self correcting to put weight on the foot.

For everyday wear, we've always bought regular shoes. His talipes foot is maybe a half size smaller. Not enough to make a difference. 

 

 

 

February 2009. Excellent results!

Still in the brace/boots at night. He occasionally says he doesn't want to wear them but he never fights it or is very adamant even. We've been very strict in using it so it's just part of his sleep routine (naps and bedtime).

 

At about his fourth birthday, we've stopped with the braces! So far so good! He started getting more upset wearing the braces. Most nights were okay. If he wouldn't have started getting upset, I would have kept going a bit longer. Current recommendations are until age 4 though. We made it! Things to look for in regression would be walking on tip toes or on the outsides of his foot. His foot still looks fantastic and has excellent mobility. We'll go for another follow-up 6 months after stopping the bracing. 

Unilateral talipes normally means that the talipes foot will have a slimmer calf and smaller foot. D's foot size is only marginally smaller. Not very noticeable or enough to warrant different size shoes. Calf size is more noticeable later on. If I look closely, I can see a slightly thinner right calf but not much at this point.  

 

Although things are great so far, regression is still possible for a couple more years. If all is well with the next two visits, I expect we'll have annual visits at that point for awhile. Sure it stinks to have to have gone through all this but I have to say it's been okay. It seems to be a much bigger commitment in the 'long' run than surgery but for us, the Ponseti Method was absolutely undeniably the right choice. No painful scarring or repeat surgeries that I've heard some adults talk about. After all the commitment and efforts involved, I'm happy to say that he'll probably never remember any of it! 

 

 

August 2011: At 5 years old and completely out of the brace for a year, D's foot continues to look terrific. There is the slightest scar from the tenotomy and his talipes (right) foot is about a half size smaller. He runs and plays sports with absolutely no problems. Surprisingly, he remembers nothing about the brace.

The talipes foot is the right foot. 

 

You really have to be looking to see any difference in the calves at this point.

 

 

 

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last updated: 04/14/2014