Everything clubfoot baby

So your baby has been “diagnosed” with clubfoot. Let me be the first to tell you that your baby is going to be ridiculously strong. I put the word “diagnosed” in quotes because clubfoot is not a disease. It is not something that will impede your child’s life or get in the way of developmental milestones. It is something temporary that will make your baby stronger and make you an even better mama.

When I first found out that Ethan had bilateral clubfoot at my 20 week ultrasound, I had naive pictures pop into my head. I had heard of clubfoot before, but I had no idea what it was. This can be a testament to how far treatment has come over the years. Treatment is done so early in life that we don’t see any remnants of clubfoot when a child is older (unless treatment isn’t done as directed by your physician or the case is extremely severe).

Once I got back into the waiting room
and consulted my best friend, Google, I saw exactly what clubfoot was. But, as
a first time mama, and now a clubfoot mama, I still was left with so many
questions.

clubfoot baby feet on comforter.

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What is Clubfoot?

About

Clubfoot is a very common birth defect and affects every 1 in 1000 babies and is twice as common in boys than girls. Many babies just have one foot affected, but Ethan had what is called bilateral clubfoot, meaning both feet were affected.

A clubfoot normally turns upward and
inward, like a golf club, but can vary in the severity of the turn. All
muscles, bones, and toes are present. They are just misshapen into the form of
a club.

What Causes clubfoot?

Clubfoot is a congenital anomaly, which is just a fancy term for a birth defect. You may also hear it referred to as congenital talipes equinovarus (CTEV). The jury is still out as to what causes clubfoot, but I encountered many different theories in my research and conversations with physicians.

Every single time hubby and I went for
an ultrasound or spoke with a doctor, the first question they asked us was if
anyone in the family had ever had clubfoot. This led me to believe that it is
genetic, though many doctors deny this claim. I did read a very interesting
article stating findings that persons with clubfoot have an abnormality in the
17th chromosome (source). This could lead to the argument that
it can be genetic.

Another theory is based on
environmental surroundings in the womb. My pediatric orthopedist shared this
possibility. If the womb is cramped and/or lacking enough amniotic fluid for
baby to grow properly, this may cause clubfoot. Either way, the true cause is
still unknown, although if does run in the family, your baby is more likely to
have it.

Treatment

Normally, your baby will start treatment within the first week from birth. Most doctors follow the Ponseti Method of treatment, which involves casting and a brace.

progression of clubfoot baby feet during casting phase.
ultimate guide for clubfoot baby
(c) Simply Working Mama

The first stage of treatment is serial casting. I compare this stage to getting braces. Every week, your baby will get a new set of casts that slowly shape the feet into proper alignment.

Next, the majority of cases will
require a very, very minor surgery called a tenotomy. This is the cutting of
the heel cord, or Achilles’ tendon, to lengthen it. The way that the clubfoot
is formed in the womb doesn’t allow for maintenance of the proper foot alignment
if the tendon is not allowed to lengthen. This can’t happen independently, and
so a surgeon is able to remedy this easily.

The final stage, which I compare to wearing a retainer after having braces, is the boots and bar phase. This is the most important phase because without it, your child’s feet will revert back to the clubfoot shape. Your child will wear the brace full time for a few months and then only during nights and naps for up to 2-5 years of age.

How to Prepare for your Clubfoot Baby

I would be lying to you if I said that raising a clubfoot baby is without its challenges. Different stages come with different obstacles, but knowing how to mentally prepare for these obstacles can make it a lot easier. This was a reason I was so happy that we found out about Ethan at my 20 week ultrasound. I was able to tailor my registry to fit his needs. Check out my post on the Top 10 Clubfoot Baby Essentials so you can see my favorite items that helped us as clubfoot parents!

clothing

The first thing you have to think of is clothing. Cute footie pajamas will unfortunately not be an option, but there will still be so many other adorable outfit choices! In the casting phase, onesies were my go to outfit of choice because not a lot of long-legged outfits would fit over the top of those hefty casts. When Ethan got his bar, we still loved our onesies, because, well, Florida summers speak for themselves. Carter’s also has some really nice rompers that were so convenient too.

baby gear

Another thing to think about is all of
your baby gear. Since everyday things like breastfeeding and diaper changing
are made more difficult, you don’t want gear that will add to the challenge.

  • Car Seat–look for a car seat that is very wide where the baby is supposed to sit. Once you get the boots and bar, you want to make sure the baby’s feet can fit comfortably in the seat and not be tilted.
  • High Chair–Your baby might not be in the boots and bar full time when s/he is ready to start solid foods. But, just in case, it’s always good to be prepared! Look for a high chair that you don’t have to detach the bar to slip baby’s feet through. We use one that has the leg separator, but the top of it is the tray. All we have to do is take the tray off, sit baby down, and buckle him in. Easy peasy!
  • Baby Carrier–Invest in a legit baby carrier. Wrap carriers are cheaper and may be convenient, but baby will be heavier and bulkier with both the casts and the bar. We tried the wrap carrier and it was much more difficult for us to use. First, it was difficult to get Ethan inside the wrap. Second, I was afraid with the extra weight and bulkiness that it would turn into a safety issue. However, if you can make it work for you, all the better!

Must Have Tips for your Clubfoot Baby

Great things to have on hand…

clubfoot baby in casts with legwarmers
ultimate guide for clubfoot baby
(c) Simply Working Mama
  1. Legwarmers–The smell and the roughness of the casts bothered me so much especially as I was beginning breastfeeding and was already tender and sore. Legwarmers are perfect to cover up the casts. They also protect the casts from bodily fluids since the casts can’t get wet. Bonus: they are super cute!
  2. Bar Cover–Once baby gets the bar, they are going to be learning to lift their legs and bang them all over the place! To protect your furniture and your baby’s forehead, get a few bar covers. I like these, but DIYShowoff has a tutorial on how to make them on the cheap.
  3. Tylenol–Changing casts can be a painful process. With Baby E, we were able to take his casts off the night before to give him a full bath. When the doctor is manipulating the feet to put the next set of casts on, it can be a painful process. Ask your doctor if you are able to give some Infant Tylenol to help with the pain. We were able to give Ethan a dose an hour before the appointment and then through that night to help ease his discomfort.

Things to think about…

  • When you first find out about your baby’s clubfeet, research pediatric orthopedists in your area. You might want to see if you can make an appointment to meet with them and discuss treatment and answer any questions you may have. Our doctor didn’t have time to meet with us for a face-to-face appointment, but I left questions with the nurse and he was more than willing to answer all of them for me.
  • Bring a bottle or pacifier with you to appointments. Like I mentioned earlier, casting appointments are not very fun and can be uncomfortable for your little one. Distracting baby with a pacifier or a bottle can help the appointment go more smoothly and also help the doctor get the casts on faster. Ethan slept through the entire first appointment, but he was only 4 days old. Each appointment after that was harder to distract him, but at least we got only intermittent crying fits with a pacifier or bottle present.
  • Look into your state’s early intervention program. Every state has a program that your physician can refer you to for state funded services. This is the birth through 3 year old version of an IEP (Individualized Education Plan) called the IFSP (Individual Family Service Plan). Your child can be evaluated for qualifying services. Ethan qualified for physical therapy so we have a physical therapist come to our home once every two weeks for an hour of therapy with him.

Common Questions

How long does each stage last?

This can depend on the severity of each case as each child is different. On average, the casting phase lasts approximately 6-8 weeks. Your baby will get a new set of casts every week. Each cast will slightly move the feet closer into the proper position. After the serial casting, your doctor will schedule the tenotomy. This is the surgery I previously discussed that cuts the heel cord. The doctor will put on another set of casts, but this time for 3-4 weeks. This allows for healing after the surgery.

clubfoot baby laying on stomach in dobbs bar
ultimate guide for clubfoot baby
(c) Simply Working Mama

The last stage is the boots and bar. When your baby gets the boots and bar, s/he will have to wear it full time for at least 3 months, possibly longer. Your doctor will determine the definition of “full time”, but we are allowed to take Ethan’s off for approximately 30 minutes at night for bath time. The final stage will be to keep the bar on for nights and naps. This stage can last up to an additional 2-5 years.

I am not a medical professional so
these are just averages that my doctor shared with me. Each doctor may have
differing opinions and every child’s case is completely different. Trust your
doctor to determine the best treatment plan for your baby.

What is the Clubfoot surgery like?

The surgery, called a tenotomy, is a
very quick and easy procedure. Your baby will most likely be under general
anesthesia for the duration of the surgery. It normally will take about 30
minutes to complete. In order to cut the heel cord, your physician will make a
very small incision right above the heel. When I say small, I mean like 2mm.
It’s so small I can’t even see the scar!

The way my doctor did it, there were no stitches involved because the size of the incision. There was only one small bandaid that I took off when I took off the casts a couple of weeks later. Other doctors may feel the need for stitches so ask about this and the follow-up care necessary.

Post-surgery

Coming out of anesthesia was not fun. Since you have to restrict baby’s food intake before surgery, Ethan hadn’t eaten since 4 am (for an 8:30 am surgery) at one month old. By the time he woke up around 9:15 he was starving and screaming. I tried to breastfeed him, but he couldn’t calm himself down enough to latch. Luckily, I had a couple of bottles of breastmilk (since I had to pump from skipping a feeding). He took some, but still was in a lot of pain.

The recovery nurse gave him a little
bit of some pain medication to help him calm down so when he was ready, he
could eat.

Depending on how old your baby is at
the time of surgery, you may have to stay overnight at the hospital. Anesthesia
guidelines require that babies of a certain age be monitored for a set amount
of time before being able to be released. Since Ethan was born three weeks
early, and had the surgery earlier than expected at one month old, he didn’t
make the cut off and we had to spend the night.

The mama experience

Emotionally, this is going to be a very
difficult time for you. I remember on the way home from the hospital, my hubby
and I just sighed a huge sigh of relief thankful that the hardest part of our
journey was over.

Nobody wants to see their baby have to go through surgery at all, let alone at such a young age. Afterward, I hated seeing Ethan hooked up to all different machines. It made cuddling him and feeding him very difficult. And that’s all I wanted to do. But just remember, it is only one day out of many beautiful days you will spend with your baby. It will be over before you know it and your amazingly strong baby is one step closer on his/her clubfoot journey!

How much does having a clubfoot baby cost?

There is no definitive answer to this
question because it depends on your insurance coverage. What I can do for you
is break down the medical expenses. You can be guaranteed though that you WILL
have to pay your entire deductible and start paying coinsurance if this is part
of your plan.

Casting phase

First, you have to consider all of your specialist visits. Each time you go to the orthopedist you will have a copay for the visit. We also had to pay for the casting materials as this was not covered under our insurance. So multiply your specialist copay by how many casting visits (remember on average of 6-8 casts, plus followup visits). If your insurance doesn’t cover casting materials like mine, those were approximately $50 per visit.

surgery

Next up is the big one: surgery. This
will probably meet your deductible if you haven’t already. There were three
bills associated with the surgery for us:

  • Cost of the surgeon
  • Cost of the anesthesiologist
  • Hospital related expenses

Without insurance, this totaled approximately $17,000. For your approximate out-of-pocket cost, subtract what is left of your deductible and then multiply the balance by your coinsurance. Lucky you if you reach your out-of-pocket maximum!

Boots and bar

dobbs bar
ultimate guide for clubfoot baby
(c) Simply Working Mama

The last thing is your boots and bar.
These run about $1000. And over the course of a couple of years, you will need
a few of these as your baby’s feet grow. If you have the Dobb’s Bar, you will
only need to purchase the bar once and will just have to get new shoes when
needed.

Is clubfoot considered a disability?

Clubfoot in babies is considered a temporary disability. Clubfoot treatment does exist and takes place before the foot formation impedes any developmental milestones. It is when the clubfoot is not properly treated or is allowed to revert back to its original position that the condition could be considered a disability. It is only considered this when it limits a child or adult from walking properly. This is completely preventable though with careful attention and prompt treatment.

How does clubfoot affect a child?

If treatment is started immediately,
your child will probably never remember having clubfoot in the first place. All
of the phases of treatment occur so early in life that it will not impact any
developmental milestones. Even with the bar on, your baby will still be able to
learn how to crawl. Ethan was scooting at 4 months with his bar on! The
transition to the bar only being on for nights and naps normally happens before
baby is able to crawl. Therefore, your baby will still crawl and walk within
the developmentally appropriate range.

One way your child will be affected is
that they will become incredibly strong! Babies will build up so much strength
from lugging around the heavy casts/bar. Ethan loved showing off how he could
lift his bar and knock it up against the wall as early as 2.5 months.

How will my baby’s clubfoot affect their daily activities?

There will be more challenges to daily
activities for you, mama. Your baby won’t have much difficulty because they
will know no different. Having heavy things strapped to their feet is all that
they have known since birth.

Breastfeeding can be one thing that is
a bit difficult. Because of the bulkiness of the casts and the bar, finding a
position that is comfortable for both you and baby may take some time. However,
it is completely doable! Just keep trying different positions out until you
find the one that works best for you and your baby.

Diaper changes can also be a challenge
at first. The casts can be extremely slippery, especially if you have a squirmy
little one. You also need to try to keep both the casts and the boots (that
have leather straps) clean from any stray bodily fluids. This can be so tricky!
Funny thing is that you will get so used to having these on baby. You may find
it harder to change baby’s diaper without casts or the bar!

Things to remember…

clubfoot baby in casts with legwarmers
ultimate guide for clubfoot baby
clubfoot baby newborn
clubfoot baby life
clubfoot baby products

Your little one is beautifully and
wonderfully made. You can expect all of the same amazing joys of motherhood as
you would with a non-clubfoot baby.

Just remember, you will be embarking on
a beautiful journey. It is something that your baby will probably not even
remember. It honestly will be harder on you than it will be on your baby! You
will have an emotional experience, but it will only make you and your baby
stronger (both mentally and physically)!

I’d love for you to let me know your thoughts in the comments section below!

#momlongmomstrong

PS-Don’t forget to share!