Ultrasound Diagnosis of Clubfoot -What next? Are more tests necessary?

Be Mindful of Your Attitude with the Club Foot Diagnosis

Your world has been shaken with the diagnosis and it’s normal to be upset. It’s important to feel all of those feelings instead of pushing them down or sweeping them under a rug. Now that you’ve had a good cry, dried your tears and are seeking resources (yay! You found a great one here and in the facebook group!), it’s time to get a strong mindset going.

First let’s look at perspective. Of all the conditions detectable via ultrasound, club foot is the best one to have. It’s curable, the treatment is non-invasive, and club foot kiddos go on to live full, active lives. Here’s just one list of some pretty important people who had club foot. https://cliftonfootandankle.com/2016/06/02/celebri...

Let’s also “zoom out” on life a little and think about the human existence. While social media makes us think there is a perfect life out there to achieve, the truth is we will all have struggles, disappointments, hurts, injuries, sadness, anger…the list goes on and on. But we will also have joy, triumphs, healing, victories…this is simply how life is.

So as a parent (or grandparent or other loved one of a club foot cutie), you have a choice. You can let this diagnosis get you down and keep you there (the “woe is me” attitude) or you can model for your child an attitude of a conqueror. Since we know that in this life we will have trouble, a decision to lead your child in how to get through hard situations is a gift you can give them. This will show them how to persevere when they are older and face hardships of their own (and they will!).

How do you do that? First you decide you are able to “do hard things.” “Hard” does not mean “bad.” “Hard” is part of life. So take pride in that you’re researching (we know that since you’re here!), equipping yourself to navigate this road, and you’re going to team up with your child and get this done. Yes, you’ll still have tears along the way, but the overarching attitude is positive and healthy with gratitude for support and medical advancements that make non-invasive correction possible.

If you don’t have a support system consider making it a goal to build one. The facebook group, your family, friends, and faith community are all good places to start. Find people to surround yourself with who will remind you of the truth that you are capable and strong and can take one day at a time on this club foot journey. Remember, being an overcomer is a life skill-and an important one-and as a club foot parent, you’re able to start teaching your little one that skill early. You’ll get more chances because this won’t be the last hard thing you have to do-every one of us humans will have struggles. Getting in the mental habit of persevering will help you and your child for a lifetime. You can do it!

Additional Testing & the Maternal Fetal Medicine (MFM) Consult

MFMs are the super-specialists of the obstetric world. In some areas, the MFMs are so busy taking care of very complicated pregnancies that they don’t do deliveries at all. They are a great resource to get to the bottom of complications and take a deeper look at uncertain situations.

However, they work in a world that is so super focused on complications in a department that is vulnerable to lawsuits. At least in some areas, it seems easy to get stuck in the MFM visit sequence with no common sense way out. Tunnel vision regarding complications and the fear of liability can result in one MFM visit leading to another and another with further testing at each appointment. For some parents this may be exactly what they want, and that’s great if so.

First know that your provider (midwife or OB) will follow the standard of care and offer an MFM consult once your anatomy scan shows your baby may have club foot. The reason is that there are other syndromes or conditions associated with club foot that your baby may or may not have. What are these? How common are they and what are the tests for them?

Distal Arthrogryposis - is a term used to describe a number of rare conditions characterized by stiff joints and abnormally developed muscles in hands and feet. This is not diagnosable via ultrasound or any prenatal testing.

Congenital Myotonic Dystrophy - is rare-occurring in only 1/8000 pregnancies. It is usually passed on by the mother, though she may not know she has it. It can be diagnosed prenatally through amniocentesis or non-invasive prenatal testing (NIPT).

Meningomyelocele - the most severe form of Spina Bifida in which part of the spinal cord and nerves form outside of the body, in a sac. It is very rare, occurring in 1/15000 births. It can be detected in the Quad Screen blood work (see links on tests below) but is most accurately diagnosed via ultrasound.

Amniotic Band Sequence (ABS) - a problem with the amnion (part of the amniotic sac) causes baby to be entangled by bands of tissue. It can be mild or severe and is very rare, affecting anywhere between 1 in 1200 to 1 in 15,000 live births. Ultrasound is the only way it can be detected. It is not genetic so genetic testing does not apply to this condition.

Trisomy 18 - in which a baby has an extra Chromosome 18. This condition most often means baby won’t live to delivery or will live just a little while after (a couple of week, though some little humans with Trisomy 18 do live past a year). Trisomy 18 can be detected on ultrasound and NIPT. It occurs in 1/2500-1/2600 of pregnancies.

22q Deletion Syndrome - a rare syndrome in which a very tiny part of the 22 chromosome occurring in 1 in 4000 people. Prenatal testing is not recommended for babies who have a club foot diagnosis from ultrasound that do not also have a heart defect or two or more associated anomalies and family history. NIPT is not diagnostic but can provide screening for this syndrome. Amniocentesis is diagnostic.

Most women will have an anatomy scan and are offered NIPT, which can be done by their provider (they don’t have to go to an MFM for these). You can do the NIPT at any point in pregnancy. In addition, the midwife, OB, or MFM may offer additional ultrasounds.

While ultrasounds are very common, they’ve not necessarily been proven safe. The benefits very often outweighs the risks, as far as we understand risk of ultrasound at this time, but please research to see how you feel about the safety before agreeing to more ultrasounds than you’re comfortable with. Once your baby is diagnosed via ultrasound with CF, you do not necessarily have to follow up to see if the feet are still abnormal later in pregnancy, unless you want to. An anatomy scan already looks for soft markers for other conditions that may also include CF so it is not mandatory that you have another scan by an MFM, unless this is your preference.

Let’s stop here and talk about what the NIPT is. Non invasive means it is not invasive like the amniocentesis is. NIPT is a blood test done on mom. Amniocentesis is a needle inserted into the abdomen used to extract amniotic fluid. It has a miscarriage risk of .25-.50% (one fourth or one half of a percent chance). NIPT is quite accurate but is misnamed “test” as it’s just a screening. Screenings are not diagnostic. It’s like scanning the room for your mom, where as amniocentesis is looking at each person closely to find her.

Some families will choose to stop at the ultrasound. They are comfortable with the very low likelihood of another condition being present since the rest of the anatomy scan was normal. It may be common for some providers to push for more testing at this point but as long as the parents are informed of their options, it can be reasonable to decline further testing.

Some families will request the NIPT blood test be done on mom after an ultrasound shows clubfoot. If there are no other signs of other conditions, the family may opt to stop here. They may also stop here if they are not comfortable with the risk of miscarriage, even if there may be other signs of a condition. Some families may want more information about their baby’s condition so they can prepare themselves for what may be ahead, both emotionally and logistically-for instance if they live in a rural area, they may decide to deliver in a hospital of a larger city nearby so they have access to a higher level of NICU. Knowing this information ahead of time is a pro of testing.

Cons of testing with NIPT: Since it’s just a screening, it can provide false results. The remedy to this is further testing with amniocentesis, which carries a low miscarriage risk, or waiting out the pregnancy with anxiety. Some families will choose neither test for this reason while others will find peace with further testing. There is no wrong answer, the decision is yours.

Ultimately, the question you need to ask yourself is, “What will I do with this information?” Will it help me or cause more anxiety?

Some other helpful information to consider is that you know your baby may have CF ahead of time, though sometimes parents don’t know until birth. There are many conditions not seen until birth or the weeks after birth and hospital and doctors are used to diagnosing and treating these unexpected conditions. Rural communities have protocols for flying or moving babies via ambulance to higher level NICUs. Larger hospitals treat very sick babies all the time. It may help you to discuss how this would work in your place of birth (even birth centers and home birth midwives have protocols to move sick babies to hospitals but a club foot diagnosis should not change your place of birth if you plan to birth outside of the hospital).

As you research and consider what is best for your family, know that you are allowed to accept or refuse every referral you’re given (ever-not just now). Additionally, you’re allowed to ask questions until you’re satisfied with your answers, including getting second opinions.

https://www.ortho.wustl.edu/content/Patient-Care/8...

https://www.ajog.org/article/S0002-9378(19)31127-5...

https://www.nationwidechildrens.org/conditions/22q...

https://www.gimjournal.org/article/S1098-3600(21)0...

Tests: Quad screen vs NIPT: https://my.clevelandclinic.org/health/diagnostics/...

https://www.hopkinsmedicine.org/health/treatment-t...

https://chriskresser.com/natural-childbirth-iib-ul...

https://sarahbuckley.com/ultrasound-scans-cause-fo...

https://obgyn.onlinelibrary.wiley.com/doi/full/10....

https://wfumb.info/2019/04/15/echoes-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2/

https://pubmed.ncbi.nlm.nih.gov/11476919/

In the Clubfoot Facebook group, some moms express uncertainty about showing their child’s foot/feet in public. Some admit to feeling ashamed but most express that they just want to live their life without so many questions from strangers. When you consider all the mental energy being a parent takes, it’s understandable that sometimes it’s easier to throw a blanket over your little one’s legs.

If you need to protect your mental health from an onslaught of questions, then please know you have the freedom to do so.

However, you don’t need to feel ashamed. The truth is, there’s never been a better time to be alive as far as differences go. We no longer live in an era of sending mentally ill or low IQ people to an institution far away. We embrace autism, integrate children with ADHD into common classrooms, and celebrate heroes in the Special Olympics. Of course we don’t live in a perfect world, but it is much better than decades past (in the USA, anyway).

If you truly feel ashamed of your child, please seek a counselor or other person to talk this over with. All of us have quirks, flaws, and some of us have disabilities (seen or unseen). It’s part of the human experience and your child’s value is not determined by their feet or any other flaw (we all have them!).

Some things that may help you reduce the explaining:

If you frequent the same places often (church, work, social groups, etc), consider a social media post explaining clubfoot. Most people are simply curious and caring but may not know how to ask without fear of offending you.

For encounters with other people/strangers, come up with an “elevator speech” that summarizes the condition quickly so you don’t have to use a lot of time or energy with the details. Only include as much of your journey as you desire.

Be ready to meet many new friends. When we have had our club foot girlie out in her casts or BNB, many older people approached us and said they were in BNB or their children were-and they always reassured us that the club foot child lives a full life as an adult now. I actually miss the impromptu chats now that we are in nights/naps only and no one knows she had club foot.

Sugar Water or Paci for casting

When my 9 day old granddaughter went to her first visit, everything was state of the art and amazing. However, we were given advice to use a pacifier or expressed milk which was not wise from a breastfeeding point of view. For breastfeeding mothers, it’s ideal to wait until there are 4-6 weeks of a perfect latch behind you before introducing artificial nipples of any kind so that the muscle memory used for breastfeeding isn’t disrupted too soon. If this applies to you, feel free to kindly refuse a paci for casting.

The reality is, casting is not painful. It is wet and should be warm-some babies even fall asleep during casting. Mostly babies don’t like being handled by anyone who isn’t mom, but thankfully it doesn’t usually take long and mom and dad can be in the room and even holding baby. My daughter nursed during many castings and the doctor gladly worked around her.

Use of Tylenol (Acetaminophen) for casting or bnb:

Although it is a commonly used drug, new evidence is starting to emerge regarding the potential harms of acetaminophen. Additional studies need to be done, but preliminary research shows an association between babies being exposed in the womb to Tylenol and infancy to Autism Spectrum Disorder (ASD). In the past, studies have linked infant exposure Tylenol with asthma. Again, more studies need to be done, but the best course of action is to use Tylenol sparingly, if it must be used. That means the smallest effective dose for the shortest amount of time.

Many doctors will suggest that parents give their infants Tylenol during the CF treatment process, especially during the tenotomy.

Casting and bnb is not painful, so Tylenol may not even work to soothe your baby. There are many other ways to soothe a little one. It is my opinion that medication does not need to be given “just in case” for casting or bnb.

The tenotomy is a painful procedure, though the area is numbed prior to the incision. Some parents will give a dose of Tylenol an hour or so before the procedure. Some report giving it around the clock for days after. In my opinion, the latter is a risky decision and unnecessary.

One other consideration is the dye in infant Tylenol. The National Institute of Health has asked that all dyes similar to those used in Tylenol be discontinued due to the risks associated with them and the fact that they do not add anything positive to the product.

Finally, high fructose corn syrup is an ingredient that many families may want to avoid.

It is possible to buy Tylenol in a dye free, high fructose corn syrup-free formula.

An entirely different option is to find a naturopath or functional medicine doctor to help you with alternative medicine options such as homeopathy or herbalism. In our case, we used a homeopathic product, dissolved in water and delivered with a dropper when CF treatment seemed uncomfortable or painful (tenotomy).

Babies with weighted down legs from casts and lack of mobility from casts and bnb would likely benefit from body work such as chiropractic care and cranial sacral work. These are other alternative therapies that are on the rise in the USA, though traditional doctors are often uneducated on alternative practitioners so you may need to research them on your own to see if this type of therapy would help your little one as they go through CF treatment.

https://hub.jhu.edu/2019/11/05/acetaminophen-pregn...

https://www.medicalnewstoday.com/articles/306332#F...

https://pubmed.ncbi.nlm.nih.gov/23026007/

CF treatment is an important part of your family’s story but there’s a high chance your child will hardly remember it when they’re older. How will you celebrate the milestones and remember the strides you all made? Consider keeping all the boots, or at least the first tiny ones. A journal with all the progress your child is making would be fun to look back on.

Do you need a little lift while on this journey? Make it a project to find cute onesies that are CF related. We brought our sweet girl to her casting and bnb appointments in a new onesie each time, much to the delight of her doctor and team. Another sweet thing we did was write encouraging notes and faith based verses on her casts and invite family to do the same.

Does your child need a little encouragement in the bnb department? It may be a good idea to check out this page of clubfoot books, bar covers, and other cool stuff including the very fun Brace Buddy! (animals that can wear bnb too).

Remember, this can be fun once you get the hang of it! It just becomes another part of your life that you can make better by making it special.

Shoes for Babies

Are you ready for your mind to be blown? Shoes can actually cause harm in all humans. Because our babies’ feet have been such a big focus for us, it seems crazy to do harm to them now that they’re corrected. Check out the following for more info: https://www.barefooters.org/wp-content/uploads/201...

https://www.mother.ly/health-wellness/its-science/...

Walkers and other Devices

With all the focus on feet and development, you might think walkers are a good idea to help your baby. In fact, the American Academy of Pediatrics feels they’re so dangerous they shouldn’t be sold in the USA. They also state they do not help with development and may even harm it. The harm they most likely mean is a lack of development in the hip. Many “baby holding” devices may lead to problems like this. Read the links below to learn more.

https://www.firstthingsfirst.org/first-things/doctors-say-baby-walkers-are-not-safe-dont-help-development/#:~:text=A%20new%20study%20published%20by,on%20the%20market%2C”%20Dr.

https://www.nebraskamed.com/health/conditions-and-...

Specifically baby carrier positioning (these are great for bonding, just need to watch the knee/hip positioning): https://hipdysplasia.org/baby-carriers-other-equip...