Let's start from the beginning..
You may have landed on this page because your child is somewhere in the middle, beginning or end of their club foot correction journey.
I welcome you here and hope our story can ease your worries after your diagnosis.
Our clubfoot diagnosis
I became pregnant with twins at the end of February 2017. My husband and I had been trying to conceive for about two years when we finally decided to seek out the help of a Reproductive Endocrinologist.
We both went through a series of testing (more me), and only after one failed cycle, we had a positive pregnancy test from our first IUI. Six weeks later, I was told the unbelievable news that I was pregnant with twins!
Fast forward to many ultrasounds later and my graduation to my OB, we were having our 16 week ultrasound when the technician made note to "check baby A's feet". Now to anyone without clubfoot history, this remark would have meant nothing to you, but to us, it meant something and we knew right away that we had a baby with clubfoot.
How were we so sure? My husband was born with bilateral clubfoot, and it would only make sense that there was a high probability it would affect one of the babies.
Turns out the diagnosis was correct.
Until I delivered, we were never really sure which foot it was, but we knew it was baby A and only one foot. My twins were born at 38 weeks vaginal delivery, and at this moment, our guessing was over as we saw it was her right foot.
Serial castings for clubfoot
We met with our doctor while I was still pregnant. A quick Google search led us to one of the world's most renowned clubfoot orthopedic surgeons, and it turned out he was in our backyard!
When I type that out, I realize how lucky we were in this regard.
We immediately made an appointment with him to talk through what the diagnosis meant and what the treatment would look like. Our baby needed to be at least 7lbs (3.2 kg) to be initially treated.
Knowing that we were having twins, we realized that it was unlikely she would weigh this a birth. Our Twin A, weighed 6lbs, 2 oz at birth, and with the initial weight loss that newborns go through, it ended up being an entire month before she had her first appointment with Dr. Matthew Dobbs at Children's Hospital in St. Louis, MO.
Her foot was examined as unilateral talipes of the right foot, not complex. She was placed in a plaster cast to be worn for one week. We would come back each week for a new cast to be placed after the doctor manipulated the soft tissue and foot placement.
Over the course of 2 months, she was placed in 4 separate plaster casts. The casts were relatively easy to care for. She couldn't wear standard footie pajamas, and we were inside winter months, so pants were out of the questions unless we cut a pant leg off.
We bought pairs of baby leggings leg warmers, and they worked great. Sometimes there was a little poop or diaper creme that got on the casts, but nothing major.
We tried to keep her legs covered when out in public to discourage questions, but looking back I am not sure that was the right thing to do. My husband was very sensitive to the topic, having gone through this himself, and he didn't want the extra attention.
Plus, we were new parents to twins; one with clubfoot. We were very tired and overwhelmed.
Tenotomy for clubfoot
Her tenotomy (heel cord release) was done right before her last cast was placed.
The tenotomy is an in-office procedure that involves the release of the tendon with surgical cuts. It was a very anxious moment to say the least.
Anticipating that your baby is going to be in pain is a very difficult emotion to process. We weren't allowed to go back with her, but waited less than an hour to see her again.
The nurse, Kelly, at Dr. Dobb's office was great with babies.
She had our daughter sleeping in her arms when she came back out. That night, we were to follow a protocol of acetaminophen, if needed, and watch for any swelling or blood breakthrough.
Thankfully, everything went perfect.
She wore this particular cast the longest, and next up was boots and bar.
Boots and bar for clubfoot baby
Here is where the real clubfoot journey begins.
Our doctor follows the Ponsetti Method. The method consists of serial castings, tenotomy under local anesthetic, and boots and bar wear paired with stretches for 4+ years.
Physical therapy may be prescribed, but not always.
If I could do one thing over, I would have had her go to physical therapy throughout the 4 years to have a professional continue to exercise her foot. We did have appointments every 3 months with her orthopedist for a couple reasons.
For one, so he could monitor her correction and progress, and two, so that she may receive new boots and bar as she sized out of her current set.
We initially were in a static bar with 23/7 wear, and then graduated into a reticulating Dobbs bar for 12 hour wear.
Daily boots and bar wear for clubfoot
Our protocol was 23/7. That meant for 15 minutes, 4 times per day, we could take the boots and bar off to administer her stretches. We could let her feet breath for a few minutes, check that there weren't any pressure sores, then put them back on. It was laborious at first, especially with twins.
Once I was back to work, we relied on a caregiver to implement the stretches. I must stress, DO NOT fail to do these stretches. They are critical to the biomechanics of the foot. The heel cord needs to be exercised daily when the child isn't walking yet.
Wearing boots and bar had it's limitations and restrictions, but clothing thankfully wasn't a huge issue. She could wear everything her sister wore including, the magic merlin sleepsuit and other sleep sacks for bedtime. We had to buy plenty pairs of thin cotton socks to keep handy, as well. Car seats were a non-issue, and strollers weren't, either.
I could see how baby wearing would be difficult if you are using a wrap type sling. The backpack style carriers will work, though.
Sleep & clubfoot: Sleeping in boots and bar
Before I became a sleep consultant, I was just a mom to twins who was severely sleep deprived.
I didn't know anything about bedtime routines, wake windows or even how to help my baby's sleep better. So, I will say that inside the months she was casted, we were not sleeping well.
When she went into boots and bar, we had decided to sleep train shortly after, and that helped tremendously.
The first few days after she was put in boots and bar, we would roll up a bath towel and place it under her knees in the crib. This seems to help take the pressure off the hips and ankles at first. Eventually though, she became a very good sleeper.
She took all her naps and sleeps in the crib after 5 months old and was a very active sleeper, to say the least. There is so much gross motor development in the first year, that when you pair it with boots and bar, it's a little funny to watch. My daughter slept in an array of positions.
Some as weird as sitting up with forehead on the bar pillow and even floating her legs over her body and resting on her head ( I am not making this up!)
I recommend buying a cover for your bar. It will preserve damage to the crib, as well as people. Haha, I am not joking! The bar will really hurt once your baby is mobile during floor time. Since I had twins, it was an obvious purchase for us. You can buy one here.
Continued boots and bar wear over the years.
Our daughter continued to wear her boots and bar at bedtime.
We were less strict about stretches over time, and to be honest, it wasn't something the doctor mentioned anymore at our follow-ups. She enrolled in gymnastics and swim lessons and was an overall very active toddler.
During the pandemic, her doctor, Dr. Dobbs, left St. Louis Children's Hospital and moved to Florida. We were heartbroken, but also glad to be at the 'end' of our journey in the maintenance period. We saw a different provider until her 4th birthday when she was graduated out of boots and bar entirely. We were given nightly stretches to do again at this point along with maintenance appts going forward.
It wouldn't be long before we were calling Dr. Dobbs again.
Clubfoot relapse and ATT surgery
The next part of our story will continue soon. I will cover our daughter's clubfoot relapse and experience with ATT surgery. Anterior tendon transfer surgery. TBC..
Lindsay Loring is the author of this article. She is a certified pediatric sleep consultant with Tweet Dreamzz Sleep Consulting and mother to twin girls. She lives in the metro St. Louis, MO area with her family.
Comments