If you're here to learn more about our daughter's clubfoot relapse, be sure to visit and read part 1 of her journey.
You can find out more there about how we were diagnosed and what the first 4 years of clubfoot correction looked like.
If you just starting to research the condition or you are preparing for ATT surgery, you are welcome here. Please drop me an email if you have any questions you'd like to ask.
Clubfoot Relapse in 4 Year Old
You last read that our daughter was released from boots and bar wear by her pediatric orthopedist, and it was a big day of celebration and relief to have the treatment behind us. What was once a truly stressful diagnosis and daily maintenance ritual, was now in the rear view mirror.
Everything seemed great with her foot until we went on a vacation about 4 months after we had discontinued all boots and bar wear after her 4th birthday. We were vacationing in a warm climate (February) and it was the first time I was seeing her barefoot and running/playing frequently.
I immediately made a mental note that something seemed 'off'.
The foot was naturally pulling up and in while running, and even walking, if I looked really closely. This had me a little concerned, but we enjoyed our vacation nonetheless. I would call her doctor to make an appointment when we returned. We were advised to come back at the 6 month mark anyway.
To be honest, I was not even slightly worried. I was very naïve in this moment.
We got on her doctor's schedule at St. Louis Children's Hospital. At this point, we were being treated by Dr. Pooya Hosseinzadeh. Our previous doctor, Dr. Matthew Dobbs, had relocated to Florida. We did not continue treatment with Dr. Dobbs as we thought we were only in maintenance care at this point.
Dr. Hosseinzadeh made me feel terrible, honestly.
He looked at me and asked "What happened?" even though he had seen her 5 months prior and had no concerns at that time or instructions for continuation of treatment at home. I was taken aback by this, and only then had a small feeling that something was wrong.
Waiting to be seen at St. Louis Children's Hospital
At the appointment, we were told we needed to start facilitating a series of stretches to the foot, daily, in addition to fitting her for a night time splint to stretch the foot while she slept. The consensus was that her foot was all around TIGHT. Specifically, her dorsiflexion range of motion was highly compromised. I thought, okay not so bad, we can do this.
We got her fitted for the splint and went home with a new appt to come back in a month or so. This was April 2022. I would later cancel both the appointment and procurement of the splint.
Reaching out for help (second opinion)
I immediately went home and posted in Dr. Dobb's Facebook group.
There was a public facebook group started many years ago and it's been an invaluable resource for us and so many parents. You can ask questions, post concerns and gain some insight about what others have been through. Dr. Dobbs is even known to comment and support parents.
Did you know his DM's are always open? More on that later!
The general consensus when I posted the photo above was the it 'didn't seem right', and that I should reach out to Dr. Dobb's directly. I didn't waste a minute, and after hearing back from him via Facebook Messenger, he requested these two videos.
As you can see, the right foot is coming up and in when walking and running.
Until the foot was corrected with surgery, she would also walk on her toes (right foot only) and generally never have the heel fully flat on the ground when walking, jumping and playing.
Once we got over the shock (me), we setup a Zoom meeting with Dr. Dobbs. Dr. Dobbs is located in West Palm Beach, FL at the Paley Institute.
We live in the metro St. Louis, MO area, so to go see him is a 2.5 hour plane ride or a 17 hour drive!
Picking a doctor to perform ATT surgery
Dr. Dobbs is the best of the best when it comes to Clubfoot treatment in children. You can learn more about him here. If our daughter was to have surgery, we wanted the best for her and we felt implicitly that Dr. Dobbs was the guy to treat our daughter.
On the zoom, he examined her virtually and confirmed that the foot would require a corrective surgery called Tibialis Anterior Tendon Transfer. Essentially the tendon on the inside of the foot is transferred to the outside of the foot and held in place with a string and button mechanism.
The transferred tendon will keep the foot pulling out instead of turning in, which is what a clubfoot naturally wants to do. In addition to the tendon transfer, he also released the heel cord again with a series of cuts down the Achilles tendon.
Why did her clubfoot relapse?
There is no straight answer here.
As humans, we want to know the why, and in this case, there wasn't one. Maybe it was her genetics, maybe she wasn't ready to come out of boots and bar or maybe it was the combination of many things.
I think the best thing to do to avoid relapse is to stretch the foot as often as possible, and wear boots and bar until you are cleared to be done.
Also, understanding that ATT surgery is actually part of the Ponsetti Method for full clubfoot correction. They've perfected this surgery over time as there is always a chance of relapse.
If your child is experiencing a relapse, know that you have time to process this information and what to do about it; which may include getting a second opinion. There will be a lot to process, here, both emotionally and financially.
We spoke to Dr. Dobbs in May 2022 and scheduled her surgery for September 2022. We were able to enjoy the summer as it wasn't critical that she was treated right away.
Timeline for ATT Castings and Surgery
We chose to fly for all of her appointments: 6 times total.
From St. Louis, we flew into Ft. Lauderdale International Airport and either flew out the same location or went out via Miami International airport. Luckily, these were all direct flights.
My husband and I alternated taking her. Only for the surgery did we both travel to Florida together. With another child at home and careers, this is what made sense for us.
First Casting:
August 31, 2022. We flew in on the 30th, stayed overnight at the Hyatt Place Downtown West Palm Beach. We went to the appointment, and returned back to the airport to head home.
Second Casting:
September 7, 2022. My husband flew with her to stay at the Hyatt Place Downtown West Palm Beach. They went to her appt the next morning and headed back to the airport for their flight home.
Third Casting:
September 14, 2022. We stayed at the Hilton Garden Inn near the outlet malls. This is where we would stay for the remainder of our visits. The GM, Mike, even realized we were with Paley and gave us a discounted rate on our room.
They have a nice breakfast in the morning and I found this hotel to be conveniently located to the medical office/hospital and near restaurants and shops.
The Hyatt Downtown was noisy both from street traffic and construction within the building. At this point, we would fly out of Miami going forward. Miami had a flight that got us home earlier (delays not withstanding).
Surgery:
September 22, 2022. The three of us flew into Ft. Lauderdale airport the day before. We had a nice family meal and got our daughter to bed early after a shower and a snack. We were to arrive at the hospital by 7AM to be checked in.
Post-Operation appointment and cast removal + short leg cast:
October 26, 2022. My husband took her for this appointment.
As usual, they flew the day before to make their appointment the next morning. The surgery cast was removed and the wound was inspected before a short leg cast was placed.
Our daughter had a large wound on her foot, a wound that none of us were expecting. It wasn't covered with stitches or tape or anything.
It was expected to heal from the inside out.
Be advised to bring something to distract your child at this appointment like a tablet or eye mask or comfort item.
They also removed the button under the foot which seemed a painless procedure.
We returned the wheelchair after this appointment, which made it difficult for my husband within the car rental return, etc.
Removal of short leg cast and fitting for AFO/SMO & night brace:
November 2, 2022 This appointment took about an hour or more.
We had to see the orthotic specialist for both the AFO/SMO and the night brace.
We also saw Dr. Dobbs again to review the wound and its care. He showed us the stretches to be used at home and at therapy. I was sure to take a video and I am glad that I have it!
The nurse gave me two packages of medical grade adhesive foam. Be sure to ask for two. We ended up using every bit of it and it was hard for me to locate extra, but I eventually found this on Amazon.
Tips to make this process as easy as possible
Get to know Kathy, Angela and Katy at Dr. Dobb's office or wherever you are receiving treatment.
They are incredibly talented and kind. If you need something, email them.
They will get back to you and get you taken care of during this stressful time. I had best success reaching Angela and Kathy by both phone and email.
Katy we got to know the day of surgery and she will help guide you through the post-op physical therapy process. Be an advocate for your child.
Take videos during the consults, ask questions and speak up if you feel like you need more support.
Things to buy to prepare for ATT Surgery & Recovery
We rented a pediatric wheelchair from Garden's Drugs in West Palm Beach. They had it ready and waiting for us during her first casting appointment. It is rented per month and was less than $300 total for the entire time we kept it, which was x weeks.
Shower cast cover. We found showers to be easiest with a cast on. We also borrow a shower chair from a family member.
Your child will spend a lot of time sitting down. A lap desk for activities and eating came in handy.
My mother in law also made a fabric cover for her cast while she slept. This is something that was homemade but made a world of difference since both legs were exposed when sleeping. The pre-surgery casts are made of plaster and super scratchy. Our daughter was unilateral clubfoot.
Child's walker. We used this very briefly from Amazon and then returned it.
Billies shoes. We had two pairs of high-top Billies shoes. They zip around the toe and work great with AFO/SMO wear. We sized up and went with wides.
All items can be found here
Day of ATT surgery
The order of surgery will go by age. We were scheduled to check-in at 7AM at St. Mary's Medical Center in West Palm Beach Florida. Our daughter was 4 years old at the time.
The hospital required an upfront fee at check-in. It was somewhere around $2,000. I won't be talking about cost of the surgery/treatment too much as that will vary widely according to your health insurance coverage. We had a high-deductible plan and quickly met our max out of pocket during this time.
Paige was brought back to pre-op where she changed her clothes and got comfy in a bed. Dr. Dobbs came around to mark her foot and we also spoke to several nurses and another doctor of anesthesiology.
Post-Op Recovery
We said our goodbyes and went to the cafe and waiting room to wait for a phone call from Dr. Dobbs. I would say he had called us about two hours later to tell us everything went great and the foot was fully corrected. Another 30 minutes went by and we were then called back to see her! She was VERY sleepy. Her favorite comfort item and popsicles helped.
From that point on, we were managing her pain around the clock. She was given a dose of fentanyl post-op, and then had Toradol intravenously and oxycodone orally every 3 hours rotated while we were there. The Doctor came to see us early the next morning and we were discharged around lunchtime.
One parent is allowed to stay overnight. I brought a pillow from the hotel and our own sound machine and sleep mask. We both slept terrible and were VERY ready to be discharged. We tried our best to keep the foot iced at all times; even while she slept. If you haven't gotten surgery yet, I advise to purchase a leak-proof ice pack to use while traveling. Once home, we used wrap around gel packs, as well, that were changed out frequently.
Dr. Dobb's office will arrange post-op medications. I was a little overzealous and didn't think we would need the full oxycodone prescription, especially after the pharmacist told us that our insurance company only covered three days. Listen up, get the full 5 days. You WILL need it.
Recovery at Home
Our daughter's recovery was ROUGH.
It seemed like the pain and muscle spasms were all encompassing and around the clock. She required medications like muscle relaxers and prescription pain killers for a total of 9 days. I was very discouraged with her level of pain and was anxiously waiting for it to gradually get better.
Like magic, on day 8/9 the pain went from a 10 to a 2 on the pain scale. I felt like I could finally breathe. There is nothing worse than seeing your child in constant pain.
To keep on top of her meds, she slept on a mattress in our closet for about a week so we could set times to keep her comfortable over night. During the evening and leading up to bedtime seemed to be the worst pain-wise.
After those 9 days, she was kept comfortable with over the counter pain relievers. Some medications to have on hand are Benedryl, Zyrtec, Ibuprofen & Tylenol.
She was able to return to school 12 days after surgery. The school nurse and teachers were all aware of her procedure/care and were willing to help. We looked into getting a 504 plan, but it wasn't needed as there were plenty people there invested in her care. The wheelchair made it doable and she was able to get back into a normal routine at school.
Wound care:
Her wound finally closed right before the New Year 2023. It took about 8 weeks. Once it closed completely, we've been sure to keep it hydrated and have also used scar cream. Overall, she has 4 scars on the foot for various reasons. One was a pressure sore from the AFO.
Physical Therapy after ATT Surgery
Physical therapy for anterior tendon transfer surgery started 2 days after the last cast came off. Her foot was still in rough shape, but the therapist took it like a pro.
She measured the foot and leg and took a baseline for everything. This first appointment was to develop a game plan, teach us how to help at home and most importantly, get her walking again.
Physical therapy protocol
Wean from AFO to SMO in 6-8 weeks
Wean from SMO in 4-6 weeks.
Strengthen to full weight bearing
Full range of motion
We would do 3 visits per week for 12 weeks. We then went down to twice per week, and now at 8 months post operation, we still visit once per week.
Exercises include:
Peroneal strengthening
heel cord stretching
forefoot eversion exercises
gait training.
As I write this, our daughter is active in swim and gymnastics.
This surgery and clubfoot has NOT held her back.
She keeps up with her peers and twin sister just fine. Long term, we worry about overall biomechanics of the foot/leg and its overall range of motion, etc.
Right now, we are working on plantar flexion (pointing toes) and strengthening the ankle and foot. Because she has family history of the defect, we can see first hand some of the complications that may arise as an adult.
Thank you for reading, if you made it all the way here. I hope this blog helps you feel more at ease if you are going through tendon transfer surgery in addition to gathering a few tips and tricks for your experience. If you would like to ask a question, I am more than happy to answer!
Lindsay Loring is the author of this article. She lives in the St. Louis, MO metro area with her family. She is the owner and founder of Tweet Dreamzz Sleep Consulting.
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