Learning about a possible health condition for your baby during pregnancy is a moment that changes everything. Suddenly, your vision of what’s ahead may start to shift, along with your feelings of excitement, fear, or confusion. In this post, you’ll step into the story of Nikki Holekamp, a mom who received her son’s clubfoot diagnosis while still pregnant. Through her words, you’ll see the emotional ups and downs, the waiting, and what it’s like to seek the right help. Nikki’s advice cuts through false reassurances and gets to the heart of what parents in similar situations need: honest support, reliable information, and the courage to listen to your own voice.

Hearing the Diagnosis: A Sudden, Life-Changing Moment

The 30-Week Ultrasound Call

Nikki found out about her child’s possible diagnosis at the 30-week mark of her pregnancy after a routine ultrasound flagged growth restrictions. Up to that point, everything appeared fine, the 18-week scan showed nothing unexpected. Suddenly, after one call from her midwife, everything changed.

I remember exactly where I was standing. Who I was with. When something traumatic happens, it carves itself into your memory: my midwife on the phone, saying the ultrasound tech thinks they see club feet.

At that moment, Nikki didn’t even know what clubfoot was. She imagined the worst, worrying her child might be born without feet altogether. Her midwife didn’t offer much information, just a vague statistic about how these things are sometimes wrong and instructions to visit a specialist. Nikki had to wait another agonizing week to get more answers.

All I had was my fear and Google. I felt blindsided, like the ground had been pulled out from under me.

First Emotional Response

Nikki’s reaction? Pure overwhelm. She broke down in front of her dad. Her husband was away at work. The news left her feeling completely lost without any real explanation or guidance.

Here’s what Nikki described feeling in those early days:

• Shock: Finding out something unexpected and unknown about her baby’s health.
• Overwhelm: The weight of worry and the unknown.
• Fear: All the possibilities and what-ifs crowding her mind.
• Anxiety: Not knowing what comes next, not for days, not for weeks.

It was like time froze for me. I was stuck in a state of limbo, counting down the days until I could know more, but never really being able to move forward.

Surviving Uncertainty: The Pregnancy That Follows

The Wait for Confirmation and the Roller Coaster of Monitoring

About a week after that first phone call, Nikki met with a specialist who confirmed that her unborn son had clubfoot. But that wasn’t the end of surprises. She endured weekly ultrasounds, each one churning up new concerns: some hinted at shorter femurs, others pulled back. The information changed so often, it became hard to trust any of it.

The endless tests didn’t bring comfort as they just made the unknown feel more oppressive. Nikki faced weekly emotional swings and the looming concern something more complex might be going on. In time, she reached a breaking point.

Nikki made a bold decision:

She told her doctors she’d had enough, refusing any more ultrasounds and stress tests. She wanted an early induction to bring some certainty, but even that wasn’t straightforward. Doctors hesitated, encouraging her to wait. Nikki insisted, drawing a line and finally having her voice heard.

“We need to meet this baby and see what’s really going on. I’m not waiting anymore.”

Learning to Speak Up and Push Back

This stand was a turning point. Nikki had to learn a skill that doesn’t come naturally to most new parents: standing firm in the face of expert opinions. She says it’s a lesson shared by many parents in her position:

• When no new info is changing anything, set boundaries.
• Speak up when you feel overwhelmed by endless “possible” diagnoses.
• Trust your sense of what’s enough for your peace of mind.

“You get to a point where the information isn’t helping. You’re living in a haze of maybes, and you have to find your own limits and stick to them. No one can do that for you.”

Support Systems and Resource Gaps During Pregnancy

Unique Access: A Chance Conversation with an Orthopedic Surgeon

Nikki’s job brought her into contact with a pediatric orthopedic surgeon, an unusual bit of luck for most parents in her situation. She managed to speak with the doctor before her son was born. He gave her a pamphlet about clubfoot treatments and explained standard approaches like casting and bracing.

Even with this resource, Nikki still felt unprepared. The pamphlet was old, and much of what she learned was general, not specific to her son’s complex case.

Most parents don’t meet the doctor ahead of time. If you can, make it happen. Setting up a consultation before birth isn’t always offered, and it often isn’t free, it takes real initiative. Yet, Nikki strongly believes that meeting the potential doctor in advance helps build trust and lets you judge if the match is right for your family.

Lack of Routine Support for Families

Most families don’t get early access or one-on-one time with orthopedic specialists before birth. Scheduling such visits means working around insurance, finding specialists, and sometimes paying extra fees. It’s easy to get lost in the shuffle unless you push for it.

How to Schedule a Prenatal Orthopedic Consultation:

• Ask your OB or care provider for referrals early.
• Be open about any diagnosis, concerns, or questions.
• Call specialists directly, book an informational appointment if needed.
• Prepare questions beforehand about treatment steps and outcomes.

Even with information, Nikki realized that a flyer and a chat wouldn’t prepare her fully. Every family’s situation and every diagnosis is different. Still, the ability to meet your child’s potential care team ahead of time can offer peace of mind and a feeling of control.

“You won’t always feel strong, but you will be enough for your child. Keep trusting yourself, even when it’s hard.”

Processing the Emotions and Finding Real Support

Steering Clear of False Positivity

People mean well, but when Nikki shared her news, many responded with “It’ll all be okay,” or “It’s probably nothing.” Instead of comfort, these words left her feeling more alone.

The support she needed didn’t come from empty reassurance. She found real comfort only with people who could be honest and say, “That’s tough. We’re here for you.” Over time, Nikki’s social circle shifted to include those who listened without judgment or pressure.

Qualities to Look For in Supportive Friends and Family:

• Honesty: Willing to say when something is hard, not just gloss over.
• Presence: Able to listen without trying to “fix” your feelings.
• Consistency: Stick around whether you want to talk or just sit in silence.
• Authenticity: Engaged and real with your pain and experience.
• Flexibility: Respect your need for space, time, or distraction.

Making Space for Grief and Healing on Your Own

Nikki started spending more time alone, walking the beach or finding quiet moments away from the pressure to appear happy. She’d cry when she needed to, letting herself feel sadness and grief for the pregnancy and child she once imagined.

“I had to let myself feel those emotions, even if that meant being alone. It’s okay to grieve what you thought your experience would be.”

This time for herself, though out of character, became key to her healing. Nikki says it’s normal if support looks different than before. Sometimes, your best help comes from solitude and reflection.

Letting yourself feel the full range of emotions isn’t weakness, it’s essential.

In pregnancy, people expect you to be excited and positive, but life is more layered. If your experience is different, that’s okay.

Adapting Your Support and Needs

Nikki learned her needs changed as she processed and grew. The people who supported her best weren’t always the ones she expected. Giving herself permission to feel what she needed, cry, and seek out honest support (or time alone) made a difference in coping with her child’s diagnosis.

Key emotional processing advice:

• It’s normal for support needs to shift.
• You don’t have to force old strategies to fit a new, harder situation.
• Pay attention to what feels helpful in the moment, even if it’s a new experience.

Nikki’s Advice for Parents Receiving a Prenatal Diagnosis

Trust Your Intuition and Be Your Child’s Advocate

Nikki’s most important lesson took time to fully embrace, trusting her own gut. It’s one thing to tell parents, “No one knows your child better than you.” Living that truth, especially around medical professionals who seem to hold all the answers, is much harder.

She faced a turning point at her son’s first orthopedic appointment (just days after birth). Nikki had expected tests and a detailed plan. Instead, her baby’s legs were quickly cast and she was sent home. Something didn’t feel right, but the shock kept her silent.

Main advice for any parent in this situation:

• Find your voice, even when it feels hard.
• If something feels off, speak up even if everyone else seems confident.
• Ask questions, do research, and seek a second opinion if you need one.
• Remember: You are your child’s best advocate, always.

“No one else is going to advocate for your child like you can. Trust your instinct. Take initiative. Don’t be afraid to speak up, even if it’s uncomfortable.”

Expect Challenges in the System

Don’t assume the medical process will answer all your questions or always guide you in the right way. Sometimes, you’ll have to insist on being heard. That’s not just okay: it’s necessary. Being confident in your parenting doesn’t mean never feeling lost or overwhelmed. It means moving forward, building knowledge and confidence as you go.

Final Encouragement

You may feel alone or uncertain, but, as Nikki’s story shows, you’ll find strength you didn’t know you had. Being a parent to a child with a medical diagnosis during pregnancy is a winding, emotional, difficult path. That makes your advocacy, your love, and your courage all the more powerful.

You can learn more from parents like Nikki and find other stories and resources by visiting the OP Specialty Bracing Parent Experience Series. These real conversations shine light on the actual day-to-day journey of families dealing with pediatric orthopedic conditions, reminding us all that every parent’s voice matters.

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Disclaimer:

OPSB products and products distributed by OrthoPediatrics Corp. should be used under the guidance of qualified healthcare professional. Individual results may vary. Please consult your pediatrician or orthopedic specialist for professional advice, including intended use, warnings, precautions, side effects and contraindications. This video is for informational purposes only and does not constitute medical advice. Always follow your doctor’s recommendations and instructions. Nicki Holekamp did not receive compensation from OrthoPediatrics Corp. for her participation in this interview. OrthoPediatrics Corp. and Ora Médical, Inc. are unrelated companies affiliated through the distribution of a product not discussed in this interview.

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Medical language can sound like a secret code, especially when you learn your child has an orthopedic condition such as clubfoot. Parents are thrust into unfamiliar territory, surrounded by acronyms and new terminology. It’s easy to feel confused, overwhelmed, or even hesitant to speak up. In this post, we’ll walk through one parent’s journey learning to decode the medical language, offer practical advice, and show how you can turn confusion into confidence as an advocate for your child.

The Challenge of Medical Language for Parents

When you first hear your child’s diagnosis, the words probably sound unfamiliar. Jacob, a parent who joined the OP Specialty Bracing Parent Experience Series, shared he knew absolutely nothing about orthopedic terms before his son was diagnosed with clubfoot.

He described the moment at the 20-week ultrasound when he first heard the word “clubfoot.” Like many people, he pictured a golf club. He’d never seen or even heard of the condition. Even after doctors started explaining, he found everything “was a foreign language.”

Jacob’s experience is common. Medical providers use certain words and acronyms so often, they forget families might be hearing them for the first time. Simple terms or phrases like “FAB,” “AFO,” or even “boots and bar” can leave parents scratching their heads. Every appointment may introduce more new terms, building on information you’ve just started to grasp.

It can be overwhelming. Parents want to do the best for their children, but not understanding the language often makes them feel left out of important conversations. This leaves parents feeling confused or hesitant to ask questions. Should you speak up? Is it silly to ask for clarification?

The reality is, stepping into this world of medical care means starting from scratch. Everyone learns differently, but many parents find that confusion can turn into understanding with time and the right support.

Medical Jargon vs. Parent Understanding:

Medical Term	What Parents Might Hear	What It Actually Means
Clubfoot	“Golf club foot?”	A condition where a baby’s foot is twisted out of shape or position
FAB	“Fab? Like fabulous?”	Foot Abduction Brace, used in clubfoot treatment
AFO	“A what?”	Ankle-Foot Orthosis, a type of brace
Boots and Bar	“Is this a nickname?”	Common name for brace used in clubfoot care

Common Medical Terms and Acronyms Parents Encounter

Understanding Clubfoot Terminology

Parents often struggle with the term “clubfoot” at first. When Jacob heard the word, he admitted he didn’t know what the condition was or even what it looked like. He had to search online and look at pictures before making the visual connection. “It actually does look like the head of a golf club,” he said, echoing the confused thoughts of many parents who face new medical terms.

Even the word itself can be confusing. It might stir up the wrong mental image or feel disconnected from what’s actually happening to your child. That’s not your fault. The words used in medicine don’t always draw clear or helpful pictures for families new to these concepts.

Decoding Acronyms and Treatment Devices

When doctors and therapists start using acronyms, it can make things more confusing. Here are some you might hear if your child is being treated for clubfoot:

• FAB (Foot Abduction Brace): A device that helps keep your child’s feet in the correct position after initial correction of clubfoot.
• AFO (Ankle-Foot Orthosis): A brace worn on the lower leg and foot to support alignment and movement.
• BnB (Boots and Bar): Sometimes used to describe the device parents call “boots and bar,” which keeps your child’s feet at the right angle.
• Orthotic Device: A broad term for external devices (like braces) used to support or align the foot and leg.

Many parents use plain terms like “boots and bar” while doctors or therapists might stick to the technical names. This difference can lead to misunderstandings if parents don’t realize both terms mean the same thing.

The terminology gap between medical professionals and parents is real. It’s not just confusing, it sometimes makes you feel left out. Knowing you aren’t alone helps build confidence to speak up and ask what a term means.

The Evolving Nature of Medical Terms

Medical language isn’t fixed. Terms and treatment methods can change over time, even for the same condition. The brace your child uses now might be called something else in the future, or new acronyms might show up in appointments. It’s normal for treatment approaches and language to change as medicine advances.

Stay flexible and know that learning new terms will be a lifelong process if your child’s care involves ongoing medical support.

Practical Strategies for Learning Medical Language

Don’t Be Afraid to Ask Questions

If you don’t know, ask. This is advice Jacob gives to every parent. He quickly learned that asking for clarification was essential to understanding his son’s care and feeling confident as a parent. Many providers appreciate when you speak up; it reminds them that not everyone speaks the same medical language.

Tip:
Never feel silly for asking what a term means, even if you have to ask more than once. You aren’t expected to know everything.

How to Approach Medical Providers

Jacob found that direct communication worked best. He often just asked, “What does that mean?” or “Can you explain that?” If you’re worried the question sounds silly, remember that doctors and therapists use these terms every day. They sometimes forget parents are starting from zero.

Here are simple phrases to keep in your back pocket:

• “I’m new to this and I don’t understand that word. Can you explain?”
• “Is there another way you could say it?”
• “Can you show me what that looks like?”

Most providers will pause and explain if you ask, and it often helps them notice how much jargon sneaks into their explanations.

Using Online Resources Wisely

Jacob admitted to searching for “clubfoot” to see images that helped him understand. The internet can be a great way to build your knowledge, but it’s important to look for information from reliable sources. Always double-check with your doctor before trusting something random you’ve read online.

Practical steps:

• Look up images to visualize the condition or device.
• Read answers on reputable medical sites.
• Avoid unmoderated forums or advice that isn’t backed by healthcare providers.

Advocating for Your Child Through Language

Learning medical terminology isn’t just about understanding appointments. It’s about speaking up for your child, making informed decisions, and feeling sure you know what’s happening.

Here’s a quick checklist for when to pause and ask:

• The doctor or therapist uses a word you haven’t heard before
• You see a new acronym or abbreviation on paperwork
• A device or treatment plan is described without details
• Instructions for care don’t make sense
• You feel unsure, confused, or overwhelmed at any point

Don’t wait until you feel totally lost. Small questions often lead to big breakthroughs in understanding.

Bridging the Communication Gap Between Parents and Medical Providers

Recognizing the Gap

Doctors and therapists use medical language every day. For them, saying “AFO” or “orthotic device” is second nature. They may not realize how confusing this sounds to parents at the start.

Jacob pointed out that providers sometimes assume a level of parent knowledge that isn’t there. Many parents only find the courage to ask after feeling lost for a while. The good news: reminding providers that you’re new to all of this can prompt them to slow down and explain more clearly.

Tips for Parents to Overcome the Gap

The biggest step is honesty. Admit when you don’t follow the conversation. It’s not a sign of weakness, it’s a sign that you care and want to do your best.

Ways to bridge the gap:

• Say out loud, “I don’t know what that means.”
• Bring a notebook or phone to record new words and definitions during appointments.
• Ask if there’s a handout or illustration that explains the treatment.
• Compare notes with other parents who’ve been through similar experiences.

Patience and persistence pay off. The more often you ask, the easier it becomes to follow along and advocate for your child.

Encouraging Medical Providers to Simplify Language

You can ask your medical provider to use simpler language or make analogies. Jacob shared that most doctors respond positively when asked, they simply forget they are speaking in jargon.

A sample conversation:

• Parent: “I’m not familiar with that term, how would you explain it to someone new?”
• Provider: “That’s a great question! Let me walk you through what it means and what you’ll see at home.”

If you feel rushed or if your question isn’t answered, don’t hesitate to ask again or request a follow-up conversation. Your child’s well-being is worth the extra minute.

Key Takeaways and Encouragement for Parents

Here’s what every parent should remember:

• It’s normal and okay to start with no knowledge about medical terms.
• Asking questions is essential and welcomed.
• Medical language changes over time, so expect ongoing learning.
• Bridging the gap between provider and parent can take time and persistence.
• You are your child’s best advocate.

Every parent learns medical language at their own pace. Mistakes, confusion, and repeat questions are all part of the journey. The most important thing is to keep asking and to never feel embarrassed about being new to this world.

It’s okay to not know. You will learn with each visit, word by word. Understanding medical language is a journey, not a race.

As Jacob shared in his experience, “If you don’t know, ask, that’s the only way we’re going to figure it out.” You can turn confusion into confidence by staying curious, speaking up, and remembering that you are not alone. Your questions matter. Your child will benefit from your courage and advocacy every step of the way.

Disclaimer:

OPSB products and products distributed by OrthoPediatrics Corp. should be used under the guidance of qualified healthcare professional. Individual results may vary. Please consult your pediatrician or orthopedic specialist for professional advice, including intended use, warnings, precautions, side effects and contraindications. This video is for informational purposes only and does not constitute medical advice. Always follow your doctor’s recommendations and instructions.

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Caring for a child with clubfoot brings a flood of emotions and a long list of daily routines, especially once bracing becomes part of family life. But as every parent knows, kids grow fast and bring their own personalities into everything, bracing included. This post pulls from real-life experience to help caregivers find the sweet spot between sticking with clubfoot treatment and adapting to their child’s changing needs.

Erica’s Journey with Her Son’s Clubfoot Treatment

Erica is a mom sharing her clubfoot bracing journey with her 3.5-year-old son, now in the final stretch of therapy. She’s part of the community highlighted by OP Specialty Bracing, sharing what day-to-day life really looks like for kids, and their families, working through clubfoot correction.

Starting Bracing: The Early Months

Erica’s son began 23-hour bracing early and continued until he was about 9 months old. This meant the boots and bar stayed on for nearly every hour of the day. Since he never had a tenotomy, a minor procedure that cuts the Achilles tendon to improve foot flexibility, his original order was for more bracing time.

Having bilateral clubfoot (both feet affected) added to the routine. Erica’s careful attention to detail helped: picking out the right bracing socks, making sure straps fit snugly, and checking foot position. In these early days, routines came easier. Babies often accept treatment without much fuss.

Toddlerhood: When Flexibility Becomes Key

As her son became a toddler, routines changed gears. With each new stage, especially those “assert my independence” toddler moments, Erica needed fresh strategies for making bracing work.

Early Challenges vs. Toddler Challenges

Early months (infancy):

• Following a strict 23-hour wear schedule
• Adjusting socks and straps for comfort
• Less resistance from her baby

Toddler phase:

• Power struggles at bedtime
• Requests for more freedom (“Can I take a break?”)
• Shorter wear time on rough nights
• Finding creative solutions after a busy day

Navigating those new demands took Erica’s careful planning (and sometimes a bit of trial and error). She’s living proof that every phase can work with patience and problem solving.

What Does Being Diligent Mean in Clubfoot Bracing?

Erica’s approach to diligence in bracing is simple but not always easy. It’s about sticking with the plan as much as possible and staying alert to the little things that make a big difference.

Daily Routine and Care Details

Consistency is the heart of clubfoot bracing care. Erica shared the habits that turned her daily checklist into second nature:

Daily Diligence Checklist:

• Braces on every night: Even when days were hard or her little one was sick, she tried to keep the schedule constant.
• Foot in proper position: Before strapping in, she checked that her son’s foot was lined up right.
• Sock check: She picked well-fitting, comfortable socks to stop blisters and improve comfort.
• Strap adjustment: Making sure every strap was snug, not too loose or tight.

Thanks to this steady routine, blisters were rare, and complications stayed away, even as she nears the last stretch of treatment.

The Importance of Consistent Bracing

Why stick to the plan? Consistency is the best way to keep a clubfoot from relapsing. Each skipped night risks undoing weeks or months of hard work. Every family will face tough nights, but sticking as close to the routine as you can really matters.

Preventing relapse is crucial for strong long-term results. Even small slips can set progress back. That’s why healthcare providers encourage families to make bracing a dependable part of their sleep time routine.

Balancing Diligence with Flexibility as Toddlers Grow

Toddlers bring a new set of challenges for clubfoot families. Sometimes, following the bracing protocol feels like a tightrope walk: too strict, and battles erupt; too relaxed, and you worry about health setbacks.

Challenges of Toddlerhood in Bracing

When evening arrives, so do battles of will. Some toddlers can see bracing as one more thing grown-ups “make” them do right up there with brushing teeth and going to bed. Erica’s son, as he grew, started asking for breaks and pushing back against the routine.

Toddler growth brings:

• More bedtime struggles and stalling
• Attempts to skip bracing nights
• Shorter total bracing hours (sometimes dropping from 12 hours to 10)
• Kids asking candid questions—“When did you put the boots on?”

Strategies Erica Used to Maintain Balance

Erica didn’t give up on diligence; she just got creative. Here’s how she adapted while keeping her son’s progress on track:

• Boots on after sleep: If bedtime turned into a battle, she waited until her son fell asleep before slipping on the boots quietly. This meant he wore them for a few less hours some nights, but still met most of the treatment goals.
• Accepting occasional “off” nights: If her son was sick or the evening was especially rough, she allowed rare breaks. Most nights, though, she kept the bracing as regular as possible.
• Open conversations: When her son woke up asking about his boots, Erica calmly explained when they went on. This honesty built trust and took some of the mystery out of bracing.

Tips for Parents: How to Balance Diligence and Flexibility

Tips for Parents:

• Stick to your goal, but stay honest with yourself: Missing one night rarely harms treatment, but a pattern can. Make every night count, but don’t beat yourself up if things go sideways now and then.
• Find what eases the struggle: For Erica, this sometimes meant late-night boot sessions, for others it might be letting toddlers help with straps or choose their own bracing socks.
• Stay calm during pushback: Power struggles are part of parenting. Avoid making bracing the center of nightly battles if you can.
• Celebrate small wins: Got through a week with minimal fuss? Celebrate together. Rewards work for toddlers and parents too.

Encouragement and Advice for Parents Navigating Bracing

The journey through clubfoot bracing is both rewarding and challenging. Erica’s biggest piece of advice isn’t about straps or schedules, it’s about giving yourself grace and knowing you’re not alone.

The Importance of Giving Yourself Grace

Clubfoot bracing routines can feel strict and exhausting. When every night feels like a replay, it’s easy to lose perspective. Erica reminds parents that every family is different. One parent might balance siblings and sports, another might have just one child at home, it all shapes your routines.

Every family has their own story:

• Household size changes everything
• Routines will never match someone else’s exactly
• What works for your child might not work for your neighbor’s

Getting caught comparing your journey to others only adds stress. Instead, Erica recommends focusing on your own progress and letting go of guilt when things aren’t perfect.

Focus on the Outcome, Not Perfection

The finish line is the same for everyone: a corrected clubfoot and a happy, healthy child. Even when bumps pop up on the journey, sticking together and returning to your routine builds positive results.

You’re doing the best you can. A few tough nights won’t erase months of hard work. Keep your eyes on the prize, and remember every effort moves your child forward.

Key Takeaways for Parents

Key Takeaways

• Consistency wins: Staying true to your bracing routine is the foundation of long-term success. Even if you miss a night, get back on track the next.
• Flexibility matters: As your child grows and develops, adapt routines to fit both their needs and your treatment goals.
• Creative workarounds help: Try late-night bracing, change up sock choices, or let your child assist in their own care to reduce struggle.
• Don’t compare your journey: Every family’s situation and routine will look different and that’s okay.
• Be gentle with yourself: Progress rarely happens in a straight line. Celebrate your efforts and focus on your child’s improved health.

Conclusion

Navigating clubfoot bracing is a mix of persistence, creativity, and compassion—for both your child and yourself. Erica’s experiences show that the journey isn’t about perfection, but about finding what works for your family while staying as close to the plan as possible. If you’re in the middle of this process, know you’re not alone. Every step forward gets your child one step closer to healthy, happy movement.

Looking for more stories and advice from other parents? Watch the full Parent Experience Series video above to hear more about finding balance and hope through the bracing journey.

Disclaimer:

OPSB products and products distributed by OrthoPediatrics Corp. should be used under the guidance of qualified healthcare professional. Individual results may vary. Please consult your pediatrician or orthopedic specialist for professional advice, including intended use, warnings, precautions, side effects and contraindications. This video is for informational purposes only and does not constitute medical advice. Always follow your doctor’s recommendations and instructions.

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