A Clubfoot Mom

This episode features a conversation with Bill Palmer, Executive and Leadership coach, Pro Bono Coach for Global Clubfoot Initiative, and recent founder of The Clubfoot Fund. Bill talks about his personal experience living with clubfoot and about what led him to become involved with GCI and inevitably start The Clubfoot Fund. To check out the impactful work Bill is doing please visit https://www.clubfootfund.org/

The holiday season always brings about a time of reflection for me about the impact clubfoot has had on our families life, and on my perspective of the world. I talk about how I felt navigating the holiday season after learning about her clubfoot diagnosis and how isolated I felt knowing my life had changed in an instant and everyone else seemed to be functioning as nothing had changed. I read a quote about grief from a recent book I read, and talk about how I think it relates to my experience of clubfoot diagnosis.

A quick check in episode with life updates for myself and my clubfoot cutie. I talk about transition to working full time and the impacts it has had on our family, and how the current clubfoot stage lends itself less to those day to day experiences and updates.

This episode features a conversation with Jacob Kodner, a clubfoot dad. Jacob talks about his experience of hearing the clubfoot diagnosis, how he went about researching treatment options, and how he feels clubfoot treatment impacted him as a first time father. There are so many clubfoot dads out there that are active partners in their child's clubfoot treatment and I am grateful for Jacob's willingness to share his with all of you. If you know a clubfoot dad who might need to hear from another dad, this is the episode to share!

I had a recent email from a parent asking about our daughter's life after BnB in regards to sports and activities and how it compares to her peers. I talk about our cutie's overall activity level and the different components that play into that. I unexpected got emotional at the end of the episode, talking about how we have seen a transition from clubfoot being a major part of her life to now only being a piece of her story. Hope this episode helps parents out there who are wondering about life after BnB!

In this episode I open up about my feelings of moving from being her primary caregiver with BnB to our cutie going to Kindergarten full time. The amount of angst I felt about her going to Kindergarten was largely tied into her also graduating from BnB and trying to figure out how to transition out of that caregiver role for her. I felt very lost and wasn't sure whether or not I wanted (or even had a right to) create content for clubfoot parents. I hope these musing are helpful in some capacity to you all!

It has been a minute since I released a new episode and I thought I would give a little update on my cutie's clubfoot and what's been happening in our lives. Looking forward to releasing more episodes soon. As always, if there is content you want to hear about, please reach out! I thrive on the feedback from you all.

For the first episode of season 4 of A Clubfoot Mom podcast features a conversation with Emily Mallion a clubfoot mom and author of the children's book "Do You Have Magic Boots?" centered around the clubfoot journey. Emily talks about her son's clubfoot journey and the unique experience they had traveling the world as a family while he was in BnB. She gives her top 5 tips for traveling and how the experience traveling informed her writing her book. A huge thanks to Emily for being a guest and to check out her book click this link: https://emilymallionbooks.com/

In this episode I talk about the challenges we faced with our cutie that we might have attributed to the BnB which in hindsight was actually probably more about her personality than anything else. It is hard enough trying to figure out what an infant needs and then you add in a medical device and it adds another layer of complexity. This is my reflection of how what I think was less about BnB and more about my cutie.

A first ever for the podcast, an episode dedicated to physical therapy and clubfoto treatment, with my incredible guest Denise Watson. Denise is an Advanced Practice Physiotherapist who is the lead practioner in the Ponseti Clubfoot Service and has been practicing the Ponseti method for 21 years. I gathered all the questions for this episode directly from parents on Instagram and Denise was gracious enough to answer them all. I learned so much from this conversation and know you will too.

In this episode I discuss what I believe is one of the most important and often overlooked questions that needs to be asked in your consultation with your clubfoot treatment providers. There are great resources available with technical Ponseti questions that delve in to experience and treatment protocol, but this is a question I think is equally as important for parents. Listen and see if you feel the same.

As my cutie gets older and enters into more organized sports, I wonder whether or not I should be telling her coaches or gym teachers about her clubfoot? I don't pretend to have the answer, I just walk through my experience with her gymnastics coach and trying to determine the best path forward with disclosing her clubfoot diagnosis to people.

A couple of months ago, I stumbled upon a bad review for my book Clubfoot Chronicles, and in this episode I discuss how I felt about the review and what it made me consider in relation to my work within the clubfoot community.

Catherine Mclean is a young woman living with clubfoot it the UK and discusses her experience of clubfoot with us on this episode. Catherine talks about how she viewed her clubfoot as a child, and how things changed when she was no longer had follow up appointments and began to experience pain as a teenage. She talks about her experience at university and how she has managed to advocate for herself to make the necessary accommodations to improve her quality of life. Catherine and I also have an interesting discussion about when and how to tell coaches and teachers about the clubfoot diagnosis. A huge thank you to Catherine for being a guest and sharing her story with us.

Anjie England is back in this episode to give us all her insights and experiences of traveling with her son Aaron for his clubfoot relapse treatment. She gives advice on how to navigate airport security, manage flights, and where to stay when you are out of state. Anjie is a wealth of knowledge in this department and I know that there are a fair amount of families who have to travel for treatment and I am so grateful for Anjie's willingness to talk about her experience.

In this short and sweet episode, I give you information about the upcoming Zoom event, "Stepping Forward Together", a parent event sponsored by MD Orthopaedics. The event is dedicated to clubfoot parents and features experienced orthotists, Shannon O'Shea from Hanger Clinic and Ksenia Major from Boston O&P. We gathered FAQ from the clubfoot community about the bracing phase of treatment and Shannon and Ksenia will be answering those questions. Anyone can register, it is completely free, and it is really focused on being an additional resource for clubfoot parents. Click this link to register: https://us06web.zoom.us/webinar/register/WN_L1rR3GgLQDKp609VCLDIgw?fbclid=IwAR0tC12XVgRa6qFHz-umcsSzon56oqxNyvXq8tqg7OE31CCZ9dT7gNvNWwo#/registration

In this follow up episode to the For Family and Friends of Clubfoot Cuties, I talk more in depth about the different ways you can support clubfoot parents at different phases of treatment. I start with diagnosis and go through extended brace wear and give ideas on what support might be helpful and what things you might want to avoid saying or doing for clubfoot parents. I speak from my own experience of what worked for me but also as a parent who wish she had accepted more help from friends and family during really challenging parts of treatment. If you are clubfoot parent this will be an episode you might share with your friends and family, and even to jumpstart a conversation about what support might look like for you as support looks different for everyone.

This episode is for the extended family and friends of clubfoot cuties and their parents. When parents receive the clubfoot diagnosis of their baby, they can feel overwhelmed with learning about the diagnosis, researching treatment methods and providers, and emotionally processing it all. I created this episode specifically for parents to refer anyone in their life to learn the basics of clubfoot and its treatment. If you are a clubfoot parent who is trying to learn themselves about clubfoot and don't know where to start to explain to you family and friends, this episode is here for you to refer them to. This episode is very informational and there will be a follow up episode with suggestions on how to support clubfoot parents at different phases of treatment. It is my sincere hope that this episode can be used a resource for you to send your friends and family who are wanting to know more about clubfoot and its treatment.

Betsy Miller joins me to talk about the upcoming release of Clubfoot Connections: Stories, Essays, and Poetry from the Clubfoot Community. Betsy talks about how the idea for this anthology came about and how we were able to take the idea and make it happen. I am so excited for this book to be released and we talk about how important it is to provide a space for all clubfoot experiences, which was a goal of ours for this book. We are so grateful for each of the authors who submitted a piece of their stories to create this amazing resource for the clubfoot community, Clubfoot Connections will be available for on June 2, 2023, just in time for World Clubfoot Day. Be sure to follow us on Instagram for information about the book and for fun giveaways.

Erica Cifone is the mother of a clubfoot cutie who joins me on the podcast today to talk about her son's clubfoot journey and her clubfoot parent experience. Erica ad I formed a friendship over social media and she has been an amazing support for me throughout this whole podcast and I am excited for her to share her story with you all. This conversation was fun for me because it felt like two friends chatting. A huge thank you to Erica for being a guest and I hope you really enjoy this episode.

In this episode I talk about the big party we threw for our cutie when she graduated from BnB. I talk about why we wanted to throw a party, the special items I ordered for her and a full run through of how the party went. Ending BnB is A HUGE deal for clubfoot families and I talk about why it was so important for us to celebrate in such a big way.

This episode is a first for the podcast as it features a mom who has two kiddos who were born with clubfoot, Katherine Jardine. Katherine lives in the UK where both her sons received clubfoot treatment and works for the Global Clubfoot Initiative. Katherine talks about the differences in her sons treatments based on their severity level, how she felt when her second child was diagnosed with clubfoot, and where she sees the difference between her sons personalities now. It was such an insightful conversation, where I learned a lot about how no two clubfeet are the same. I am so grateful to Katherine for being a guest and know you will enjoy this episode! https://globalclubfoot.com/

Our cutie has officially graduated from her BnB and I talk about how the end came about in an unexpected way. I talk about how we made the decision to keep bracing until 5 and about how our cutie reacted when we told her she didn't have to wear her BnB anymore.

In this episode I speak with Semeda, a company based in Germany who creates products for clubfoot treatment. I speak with Harald, Andrea, and Artur a team from Semeda about a wide range of topics pertaining to clubfoot. We discuss the unique challenges clubfoot treatment faces in Europe and where the company sees clubfoot treatment headed in the future. Since we were speaking over seas and they were in a group format, there are bits where the audio got a little tricky, but we persevered and the result was an engaging and interesting conversation about clubfoot. A big thank you to Semeda for being guests on the podcast, it was wonderful to have you on. https://www.semeda.de/english-1/about-semeda/

In a previous episode I talk about how important it is to advocate for your child on the clubfoot treatment journey, but now I am exploring why it is important to advocate for your needs as a parent as well. We hear time and time again that in pediatric care the parents wellness is vital to the wellness of the child they are caring for, and part of that parental wellness is the parents getting what they need from their child's care team as well. If you have more questions after an appointment, how do you get them answered? If you need more resources than what have been provided, how do you go about getting them? I explore these topics and why it is important for parents to advocate for their needs in their child's treatment journey.

While watching my cutie play at an indoor play place recently, I realized how zeroed in I am on not just my cutie's feet but all kiddo feet. I talk about my experience watching other kiddos walk, run and jump and wonder what other parents, with non-clubfoot kids, think about this. I will always be over analytical of her feet, but this clubfoot journey has made me analytical of all feet.

Katie Taylor is simply amazing, I can't explain the impact she has had on my and my cutie's life, and I am so excited to share her with you. We have a great conversation about what Child Life Specialists do and how they empower parents on their child's medical treatment journey. Katie is the CEO and Founder of Child Life On Call, which is working to expand access to Child Life Specialists to more families in need. Click the link to become a beta tested for the Child Life On Call App.

Socks, socks, and more socks. Sock talk is pervasive amongst clubfoot parents, because these aren't your typical socks. So many parents ask for recommendations about the best socks for their clubfoot cutie's and the truth is, it depends on your cutie. In this episode, I talk about experience with finding appropriate socks, what was helpful and what wasn't.

One of the biggest unknowns for us when we started BnB was how to know when it was time to switch boot sizes. It might seem intuitive, but it can come with a lot of different input and information from sources that can sometimes cause confusion. This episode talks about how we handled switching boot sizes, from knowing when it was time to move to the next size up and the plan we had to make that switch as smooth as possible.

In this episode I talk about our approach to stretching and PT for our cutie, from the onset of BnB to what we plan to do when she graduates from her BnB nightly wear. This is all information derived from our own experience and are not recommendations.

In this episode I explore my feelings of regret during my cutie's clubfoot treatment. I talk about the things I regret specific to her treatment but also personal regrets. I attempt to take the exploration a step further to think about what I have learned from those feelings of regret. Hopefully the clubfoot parents listening can find some solace or similarity in my experiences.

As my cutie nears the end of treatment I find myself unexpectedly panicked. In this episode I talk about my mixed emotions about nearing the end of her BnB, excitement and unexpected fear. Why am I freaking out when the finish line is so close in sight? I keep it real about how I am feeling about it all.

Klaire Harvey is a clubfoot mom who lives in the UK and started her own charity Head2Toe to raise awareness for correct clubfoot treatment. Klaire shares her daughter, Elise's, clubfoot journey, how is had a tumultuous start, which sometimes limits what she shares with families in fear that it will scare them. I found our conversation to be honest and enlightening and encourage you to listen to her story because it rings true to many clubfoot families. We also discuss the differences in treatment in the UK vs the US. A huge thank you to Klaire for being a guest and sharing her story wit us. http://head2toecharity.org.uk/

Dr. Nitza Rodriguez is an adult and pediatric foot and ankle specialist at Southern California Foot & Ankle Specialists, and a PIA Ponseti Certified Clubfoot Doctor. Dr, Rodriguez is well known in the clubfoot community for deeply caring about her patients. In this episode we discuss why Dr. Rodriguez was drawn to clubfoot treatment, her personal relationship with Dr. Ponseti, and where she thinks clubfoot treatment can advance in the future. I love how honest and real Dr. Rodriguez is and it is palpable how much she cares about her patients and their families. A huge thank you to Dr. Rodriguez for being a guest and I sincerely think you will learn a lot from this episode. https://socalfootandankle.com/services/clubfoot/

Sarah Maxwell is currently holds the title of Miss Veteran's Day New Jersey 2023 and an adult living with clubfoot. I first heard Sarah's story through social media and was inspired by her story and the way she spreads awareness of clubfoot. In this episode, Sarah talks about experience participating in the Miss America sponsorship competitions, how her clubfoot has impacted her journey, and how she uses her social impact initiative to spread clubfoot awareness. I am excited for you all to hear her story and a huge thank you to Sarah for her willingness to share and for all she does to support the clubfoot community,

This episode features the incomparable Dr. John Herzenberg, the Director, International Center for Limb Lengthening, and Head of Pediatric Orthopedics, Sinai Hospital, and Clinical Professor and UMMS. If you are a listener of this podcast you will recognize Dr. Herzenberg's name because of the podcast where I tell you about my experience putting on a clubfoot cast with him. He truly is a champion of the Ponseti method and you will hear him talk about how he came across the method and adopted it into his own work. Dr. Herzenberg has always been a supporter of my work helping clubfoot parents and I am eternally grateful for everything he has done and continues to do for the clubfoot community. I feel so lucky to be able to share him with you all in this episode, a huge thank you to Dr. Herzenberg for being a guest on this podcast. I really hope you enjoy this one.

This episode is a departure from many of the episodes you will hear on this podcast. I never thought I would publish this episode, but after some encouragement, I figured I would be vulnerable and speak it out into the world. It isn't polished and put together like most of my episodes attempt to be, you can even hear my kids monitors in the background. Thanks for listening and letting me keep it real with all of you.

In this episode I talk about about gift ideas for clubfoot cuties at different stages in of treatment: newly diagnosed in utero, casting/infant, toddler, and gift ideas for your clubfoot parents. With the holiday season officially upon on us, I wanted to give some ideas of gifts we received and loved, and gifts we wish we would have gotten. Note: this is not an endorsement for any product, just opinions on what we liked and what I think are good gift ideas for clubfoot families. Happy Holidays!

If you are a member of the clubfoot community in the US you are bound to come across 26th Ave Clubfoot Essentials which is owned and operated solely by Brooke Keller. Brooke is a fellow clubfoot mom who started her business of creating accessories for clubfoot items like bar covers and boot covers to bring joy to clubfoot families. We talk about how Brooke came up with the idea for her bar covers and how her business expanded through social media and the clubfoot community. Brooke is simply amazing and I can not wait for you to hear her story and to learn about all the products she makes for clubfoot cuties everywhere. https://26thaveclubfootessentials.com/

Shannon O'Shea is an ABC-certified prosthetist/orthotist and the Area Clinic Manager and National Clinical Specialist: Pediatrics for Hanger Clinic. As a strong believer in education, Shannon is passionate about ensuring families feel comfortable with, and supported throughout, their care journey. Shannon and I discuss what exactly an orthotist is and the role they play during clubfoot treatment. We talk about how important parent education is to empower parents to feel successful and how the relationship between the orthotist and the parent can play a major part in helping parents feel confident bracing at home. Shannon talks about the importance of asking questions and reaching out for help when needed. Shannon was an absolute joy to speak with and I am very grateful that she was able to be guest on the podcast today. https://hangerclinic.com/pediatrics/

In this episode I talk about the routine we set up for our Cutie's frequent blood draws for her ITP. Similar to the BnB nightly routine, we wanted to set up a consistent routine to make each blood draw as successful as possible. I talk about our whole routine and the ways in which we advocated for her throughout the process. Hope you find it helpful!

Jessica Patay is the founder of We Are Brave Together and mom to a medically complex child. We Are Brave Together might sound familiar because it is the organization that hosts the Virtual Support Group for Moms of Clubfoot Cutie, and I wanted to introduce you to Jessica because she is such an incredible advocate for her child but also for moms. She started We Are Brave Together with the intention to encouraging and serving caregiving moms everywhere through support groups, workshops, and retreats to help moms feel recharged and empowered on their caregiver journeys. I am so grateful to Jessica for being a guest on the podcast but also for all the work she has done to support moms everywhere. https://www.wearebravetogether.org/support-groups

Your child's clubfoot diagnosis comes with a lot more than figuring out the treatment path and all of it's logistics, it is a lot to emotionally process as well. So much of what I hear from families with clubfoot cuties is about the moment of diagnosis and all the subsequent emotions that went with it. In this episode, I open up about my emotional response to our cutie's diagnosis and encourage listeners to think about their own emotions surrounding the diagnosis as well.

I became a huge fan of Vedant and his family before I ever had the chance to meet them. I watched Vedant's interview with his clubfoot doctor, Dr. Lim, and was so impressed by him and his story. Vedant and his parents talk about their clubfoot journey, accessing treatment, the social stigma of clubfoot, and their Mt. Kilimanjaro Climb fundraising event benefiting MiracleFeet. It was such an honor to host this incredible family on the podcast and I know you all will enjoy it just as much as I did.

In this episode I speak with Karen Moss, a clubfoot mom and Founder and Executive Director of Steps Charity. Karen talks about making the decision to travel from South Africa to Iowa to have her son treated by Dr. Ponseti himself and how that was the precursor to everything that happened after. Karen is an amazing clubfoot advocate whose organization's vision is to improve the lives of children born with clubfoot, and they do just that. Karen talks about the main pillars of their organization and their upcoming conference in South Africa in November. I am so grateful to Karen for being a guest on the podcast and hope that you enjoy this episode as much as I did.

In this episode I share our cutie's journey with ITP (immune thrombocytopenia), a rare autoimmune disorder that causes low platelet counts. I have discussed our cutie having a new diagnosis prior, but never illuminated exactly what it was until now. I chose today to release this podcast for two reasons, the first being a celebration that our daughter's platelet numbers have reached remission levels and second it is go purple for platelet's day in culmination of September being ITP Awareness month. I break the episode into a few different sections:My struggle on when and how much of her ITP journey to shareOur explanation of ITP and experience with being diagnosisHow ITP impacted her clubfoot treatmentOur amazing experience with PDSA (Platelet Disorder Support Association)https://pdsa.org/

Chesca Colloredo-Mansfeld is Co-Founder and CEO of the nonprofit oganization MiracleFeet, which helps provide treatment for clubfoot children by increasing access to care through partnerships with local healthcare. Chesca talks about how MiracleFeet got started, what she sees as their biggest challenge in clubfoot treatment, and how listeners can get involved in their mission. I give a little insight into our personal experience fundraising for MiracleFeet as well. A huge thank you to Chesca for being a guest on the podcast and for all the work MiracleFeet does for clubfoot children around the world. https://www.miraclefeet.org/donate/fundraise

This is an extra special follow up episode as we hear from Aaron, a clubfoot cutie, about his experience of clubfoot relapse and its treatment. Aaron is a spirited and fun loving boy who is kind enough to share with everyone his clubfoot journey. Anjie and Aaron also talk about fundraising for Hope Walks, and how Aaron came up with the idea and the fun things he does to raise funds for kids who need clubfoot treatment globally. A big thank you to Aaron for his willingness to be a guest on this episode! Just wait until you hear about his wheelchair wheelies!

Anjie England is mom to Aaron, a clubfoot kiddo who experienced a relapse and treatment. Anjie talks about her experience hearing about Aaron's relapse, determining when to do treatment, and what their travel experience was like. Anjie is an incredible mom and advocate for her son, and her story is one that I really connected with. You have heard from Surgeons about relapse, and Lindsay about the relapse diagnosis, and now Anjie will tell you about the full experience and coming through the other side. As a special treat Aaron joins us at the end of our recording to talk about his experience, but you will have to wait until next week to hear that. I am so grateful to Anjie for her openness and willingness to share.

This episode is a call for submissions from clubfoot parents for the Clubfoot Anthology Betsy Miller and I are working on. I give the background for inception of the project, how Betsy Miller came up with the idea for the Clubfoot Anthology, how I got looped in, and what our goals are for the project. We want your voices to be heard. Submissions are accepted through September 2022 click this link for the submission https://www.thinkinginkpress.com/clubfoot-anthology-submission-guidelines/

In the first return visit to the podcast, Lindsay Loring gives us an update about her daughter and her current treatment plan. Lindsay was one of the very first guests on the podcast, where we talked about sleep tips for clubfoot cuties, and she shared her daughter's clubfoot story. A lot has happened since that episode was published, and Lindsay has so graciously offered to share the story of her daughter's continuing clubfoot treatment today. To say I am grateful for Lindsay sharing is an understatement, and when you listen, I know you will understand why.