The Cleft Mama Podcast

Anja Pownell

The Cleft Mama Podcast is a place for real, honest conversations about life with a baby or child born with a cleft lip and/or palate. Hosted by Anja Pownell, a German mum of three living in the UK, it brings together personal experience, practical guidance, and expert insight to help families navigate the cleft journey with more confidence and less overwhelm. After receiving a cleft diagnosis at her 20-week scan with her third baby, Anja set out to understand everything she could — from feeding and surgery to long-term care and development. Drawing on her own experience and conversations with parents and professionals, she shares the knowledge and reassurance she wished she had at the very beginning. From diagnosis and feeding to surgeries, speech, dentistry, and everyday family life, this podcast offers gentle guidance and real-life insight to support you and your child every step of the way.

  1. 4d ago

    Cleft Speech, Dental Care & Breastfeeding: What Happened at Our SNAP Workshop?

    What happens at a SNAP workshop after cleft palate surgery? And what do you do when the advice you're given doesn't seem to align with other healthcare recommendations? In this solo episode of The Cleft Mama Podcast, I'm sharing our experience of attending a SNAP workshop at Alder Hey Children's Hospital with Mika, who is now eleven and a half months old. We had very little information about what to expect beforehand, but the workshop brought together families of babies born with cleft palate to learn about speech and language development, dental health and the next stages of cleft care. There were some really useful takeaways, particularly around helping babies develop new speech sounds after palate repair and understanding what the speech and language team will assess at around 18 months. But the dental health session left me with quite a few questions. We were told about the importance of brushing, fluoride toothpaste, limiting sugary foods and drinks, and looking after children's teeth from an early age. However, I was particularly surprised when we were advised that breastfeeding should stop at 12 months because breast milk contains sugar. As someone who has spent a considerable amount of time researching breastfeeding and cleft feeding, I wanted to understand the evidence behind that recommendation. I wasn't satisfied with the explanation, and I've since submitted a formal complaint about the advice we received. This isn't about dismissing the importance of dental care. It's about making sure families receive information that is accurate, consistent and genuinely helps them make informed decisions. Disclaimer: Statements made in this podcast do not constitute medical advice. The information is provided solely for general educational purposes and is not a substitute for individual consultation with a qualified professional. I can accept no liability for any damages arising from the use of the information provided here.

  2. Oct 19

    Growing Up With a Cleft, Then Becoming a Cleft Mum (with Stacey Hussell)

    What is it like to grow up with a cleft lip and palate, and then find out that your own child will be born with a cleft too? In this episode of The Cleft Mama Podcast, I'm joined by **Stacey Hussell**, a cleft advocate, medical photographer and TEDx speaker who brings a perspective we don't often hear: she was born with a unilateral cleft lip and palate herself, and her four-year-old son Dylan was born with a bilateral cleft. Stacey shares her experiences of growing up with a cleft, from a relatively carefree childhood to being bullied at secondary school and struggling with confidence well into adulthood. When she found out during pregnancy that Dylan would also be born with a cleft, her biggest worry wasn't the surgeries. It was the possibility that he might experience the same bullying she had. We talk about how becoming Dylan's mum prompted Stacey to revisit her own experiences, how she's working to build his confidence, and why she's so passionate about changing the way society sees people with visible differences. Stacey also tells me about her work as a medical photographer and her Changing Smiles project, which aims to photograph 700 people born with a cleft, as well as her advocacy work with CLAPA, Smile Train and Changing Faces. References: Stacey's Ted Talk: https://www.tedxnhs.com/previous-events/2025-evolve/speakers-2025/stacey-hussell-2/#:~:text=A%20Senior%20Medical%20Photographer%20at,of%20those%20with%20visible%20difference  Stacey's LinkedIn: https://www.linkedin.com/in/stacey-hussell-cs3006/  Stacey's photography website: https://www.staceybonephotography.co.uk/  Stacey's Facebook: https://www.facebook.com/sbonephotography/ Stacey's Instagram: https://www.instagram.com/changing_smiles_sbp/?hl=en Disclaimer: Statements made in this podcast do not constitute medical advice. The information is provided solely for general educational purposes and is not a substitute for individual consultation with a qualified professional. I can accept no liability for any damages arising from the use of the information provided here.

  3. Oct 12

    Making Cleft Visible: One Mum's Story and a Viral Soft Toy (with Philippa)

    What happens when you start looking for cleft representation in everyday life and realise how little there is? In this episode of The Cleft Mama Podcast, I'm joined by Philippa, the mum behind **The Cleft Love Club**, whose video of sewing a cleft smile onto her daughter's soft toy has reached millions of people. Philippa found out that her daughter had a cleft at a private 16-week pregnancy scan. We talk about receiving that diagnosis, the importance of the language used by healthcare professionals, and how the support she received helped shape her experience of pregnancy. We also discuss what it felt like to meet her daughter for the first time, the mixed emotions surrounding cleft lip surgery, and why Philippa decided to start sharing her family's journey on social media. One of the things I particularly loved about our conversation was hearing why Philippa began creating toys and designs featuring cleft smiles. She wanted her daughter to grow up seeing people who looked like her represented in the world around her, and it turns out that message resonated with far more people than she ever expected. It's a conversation about representation, finding support and helping make cleft lip and palate something we can talk about openly. References: Ulrike Giebel course: https://payhip.com/BabySaugtNicht/ My lactation consultant: https://lkgs-stillen.com/ Philippa's Instragram: https://www.instagram.com/thecleftloveclub Philippa's TikTok: https://www.tiktok.com/@thecleftloveclub   Philippa's etsy store: https://www.etsy.com/uk/shop/TheCleftLoveClub Disclaimer: Statements made in this podcast do not constitute medical advice. The information is provided solely for general educational purposes and is not a substitute for individual consultation with a qualified professional. I can accept no liability for any damages arising from the use of the information provided here.

  4. Oct 5

    Children's Books About Cleft Lip & Palate: Representation, Research & What's Available

    Can children's books help our children understand their cleft, prepare for surgery and feel represented in the stories they read? In this solo episode of The Cleft Mama Podcast, I'm looking at a recently published study exploring children's books featuring cleft lip and palate and other craniofacial differences. The researchers identified 47 English-language books and looked at who they were written for, who wrote them, how much they cost and how diverse their characters were. Interestingly, around 70% were self-published and nearly 80% were written by people who weren't healthcare professionals, including parents, advocates and people with lived experience. The study also found relatively limited representation of non-white characters and only one book specifically described as being aimed at children aged 0–5. I also take a closer look at some of the books on the list, as well as a few books that weren't captured by the study but that we've found useful ourselves. We used children's books during my pregnancy to help prepare Mika's older siblings for his cleft, and I think books can be such a simple way of starting conversations about differences, surgery, scars and the questions children may encounter as they grow. I've also pulled the books together into a separate resource so you can explore them and find ones that might suit your own child and family. References: Publication: Ghahrai NN, Tran K, Rausch L, Bailey V, Ryan M, Campbell C. Representation of Craniofacial Differences With a Focus on Cleft Lip and Palate in Children's Books. Cleft Palate Craniofac J. 2026 Sep 21:10556656261489424. doi: 10.1177/10556656261489424. Epub ahead of print. PMID: 42765806. https://journals.sagepub.com/doi/10.1177/10556656261489424?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed  Lily's Super Smile: https://www.ebay.co.uk/itm/237069726929  Hi, I'm Me in Kindergarten: https://link.amazon/B04gALN40  My extraordinary face: https://link.amazon/B04Q1jD4v  What Happened to you?: https://link.amazon/B0fFFDYmz Full list of all books: https://stan.store/AnjaPownell/p/50-childrens-books-with-cleft-representation  Contains some affiliate links Disclaimer: Statements made in this podcast do not constitute medical advice. The information is provided solely for general educational purposes and is not a substitute for individual consultation with a qualified professional. I can accept no liability for any damages arising from the use of the information provided here.

  5. Sep 28

    Feeding a Baby With a Cleft Palate: Our Journey From Birth to Suction Training

    Feeding a baby with a cleft palate can look very different from the feeding journey you imagined during pregnancy. In this solo episode, I'm sharing our experience of feeding Mika from birth to 10 months old, and why, after his cleft palate repair, we're now working on teaching him to create suction for the first time. I take you right back to pregnancy, when I started harvesting colostrum and preparing for the possibility that direct breastfeeding might not be possible straight away. I talk through the different feeding methods we used after birth, including syringe and finger feeding, the Giebel-Linus Method and a modified supplemental nursing system, before eventually introducing bottles. I also share what ten months of expressing milk has looked like for me, what I've learned about pumps and flange sizing, and why I kept coming back to feeding at the breast even after our plans had to change unexpectedly. Now, nearly five weeks after Mika's cleft palate repair, we've entered a completely new stage: suction training. I explain how we're introducing a straw, changing bottle teats and gradually reducing the flow of his supplemental nursing system to encourage him to work harder for the milk, with the longer-term hope that he may eventually be able to breastfeed directly. This is simply our personal feeding journey and what we have chosen to try with professional support. Feeding plans for babies with cleft lip and/or palate are individual, so speak to your cleft team and appropriate feeding professionals about what is suitable for your baby. Pumps: Medela Swing Flex: https://link.amazon/B05XpcjOA Spectra S2 Plus: https://spectrababy.co.uk/products/spectra-s2-electric-breast-pump Medela Swing Maxi: https://link.amazon/B093RbxBP Pumping bra / bustier: https://link.amazon/B07N6jYYw  Flange inserts: https://link.amazon/B0cI8oHVB Feeding material: Tube and syringes: https://link.amazon/B0a3CcYNS Finger feeding: https://medesign.de/en-eu/products/fingerfeeder-for-premature-borns Medela supplemental Nursing System (SNS): https://link.amazon/B08gl18Ot Tubes for SNS: https://www.gottlob-kurz.de/naehrsonde  Nipple shield: https://link.amazon/B0ceMetHJ  Tape: https://link.amazon/B07c4hQyj  Suction training: Straw: https://link.amazon/B054PmXZM Teats: https://link.amazon/B05Jk5P0r  Ulrike Giebel, and Giebel-Linus-Method: https://payhip.com/BabySaugtNicht/ Research on flange sizes: Anders LA, Mesite Frem J, McCoy TP. Flange Size Matters: A Comparative Pilot Study of the Flange FITSTM Guide Versus Traditional Sizing Methods. Journal of Human Lactation. 2025;41(1):54-64. doi:10.1177/08903344241296036 Contains some affiliate links Disclaimer: Statements made in this podcast do not constitute medical advice. The information is provided solely for general educational purposes and is not a substitute for individual consultation with a qualified professional. I can accept no liability for any damages arising from the use of the information provided here.

  6. Sep 21

    Who Will Train the Next Generation of Cleft Surgeons? The Funding Changes Explained (with Lachlan Bruce)

    In this episode, I'm joined by Lachlan Bruce from CLAPA to talk about a change to the way specialist cleft surgeons are trained in the UK — and why CLAPA is asking NHS England and the government for answers. Cleft surgeons don't begin their careers specialising solely in cleft. They usually train first in plastic surgery, oral and maxillofacial surgery or ENT, before undertaking highly specialised cleft training. Until recently, the nationally recognised TIG fellowship provided a route for surgeons to gain experience across the cleft pathway, from babies' primary operations through to speech surgery, bone grafting and treatment later in life. But in 2025, NHS England decided to discontinue the central funding. Training can still be funded locally, but responsibility for those costs has effectively moved from a coordinated national programme to individual regions and NHS organisations. CLAPA's concern is that there is currently no clear national replacement or transition plan. Importantly, this does not mean families currently receiving cleft care need to worry about their child's upcoming surgery. Existing cleft surgeons haven't lost their expertise, and current teams will continue providing care. The concern is what could happen in the medium and long term as experienced surgeons retire or leave and appropriately trained replacements are needed. Lachlan explains why CLAPA believes action is needed now, what the charity has been asking NHS England and the government to clarify, and what could happen in the future if there aren't enough appropriately trained cleft surgeons. We also talk about something really practical: what we, as parents and members of the cleft community, can actually do. Lachlan explains why sharing our own experiences of cleft surgery can be powerful, how contacting your MP can help, and why a personal email telling your family's story may have more impact than simply copying and pasting a standard template. If your family has benefited from specialist cleft surgery in the UK, this is an important conversation about protecting that expertise for the families who will need it in the future. 💛 Cleft curriculum: https://www.iscp.ac.uk/media/1337/cleft-lip-palate-surgery-curriculum-2022.pdf Contact Lachlan: lachlan.bruce@clapa.com Campaign: https://clapa.com/news-and-story/clapa-responds-to-cleft-surgery-training-cuts/ Disclaimer: Statements made in this podcast do not constitute medical advice. The information is provided solely for general educational purposes and is not a substitute for individual consultation with a qualified professional. I can accept no liability for any damages arising from the use of the information provided here.

  7. Sep 14

    Growing Up With a Cleft: "I Wouldn't Change It" – Troy's Story

    What is it actually like to grow up with a cleft lip and palate? In this episode of The Cleft Mama Podcast, I'm joined by 21-year-old Troy, who was born with a unilateral cleft lip and palate in Northern Ireland. Troy hasn't spoken publicly very much about having a cleft before. But when he decided to run his first half marathon and raise money for CLAPA, he also decided it was time to step outside his comfort zone and share that part of his story. We talk about his memories of growing up with a cleft, including speech therapy, hearing appointments, grommets and surgery. What really struck me as a mum was hearing how differently he remembers some of the appointments that we, as parents, can worry so much about. Hearing tests felt like games, speech therapy meant getting out of school, and even his hospital experiences don't seem to have phased him very much. Troy also talks about reaching the end of his routine cleft care at 21, being offered the option of further surgery but feeling happy with who he is, and why he wouldn't choose to take his cleft away if he could. We also chat about his upcoming Belfast Half Marathon, why he chose to raise money for CLAPA and how he has already more than doubled his original £500 fundraising target. And towards the end, I ask Troy what he would tell his younger self. His answer is one I think every parent of a baby or child with a cleft should hear. Troy's fundraiser: https://www.justgiving.com/page/troy-beattie-2?utm_medium=FA&utm_source=CL&fbclid=IwY2xjawUTvfBwZG9mBWV4dG4DYWVtAjEwAGJyaWQRMVRTNExibXBxMVpHWVlQT0VzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeGYsHikLO7k5yo71z383ZYRTNSC2RWgxv0FVk8spucXDV4mRv8Y-mvK0GCl0_aem_aY4gukAFvQTaJMLNXZI71A Troy's Facebook: https://www.facebook.com/troy.beattie.378 Disclaimer: Statements made in this podcast do not constitute medical advice. The information is provided solely for general educational purposes and is not a substitute for individual consultation with a qualified professional. I can accept no liability for any damages arising from the use of the information provided here.

  8. Sep 7

    Cleft Lip Taping: Ambre's Experience with DynaCleft Before Surgery

    Can taping a baby's cleft lip before surgery make a difference? When Ambre found out at her 20-week scan that her son would be born with a unilateral cleft lip, she did what many cleft parents find themselves doing: she started researching. That research eventually led her to DynaCleft taping, something her UK cleft team did not routinely recommend for unilateral clefts. After researching the technique and discussing it with her team, Ambre decided to try it with her son from the newborn stage until his lip repair at four months old. In this episode of The Cleft Mama Podcast, we talk about what cleft lip taping actually involved, how Ambre applied the tape, how her baby tolerated it and why she personally feels it helped in the lead-up to surgery. We also discuss the limited and inconclusive evidence around taping, differences in practice between countries, and Ambre's experience using a nasal elevator alongside DynaCleft. But this conversation goes far beyond taping. Ambre also shares the feeding difficulties her family experienced in those early weeks, eventually finding a bottle that completely changed feeding for them, and the realities of navigating the cleft journey while also parenting another young child. We also talk about the worry that can follow a cleft diagnosis, the decisions we each made around amniocentesis, and something we've both discovered since having our babies: just how resilient children with a cleft can be. This episode shares one family's personal experience and should not be taken as medical advice. If you are considering taping or another pre-surgical intervention for your baby, discuss it with your own cleft team. References: Total TMJ: https://totaltmj.co.uk/products/dynacleft/ Micropore tape: https://amzn.to/4x7oVEo (aff link) Disclaimer: Statements made in this podcast do not constitute medical advice. The information is provided solely for general educational purposes and is not a substitute for individual consultation with a qualified professional. I can accept no liability for any damages arising from the use of the information provided here.

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About

The Cleft Mama Podcast is a place for real, honest conversations about life with a baby or child born with a cleft lip and/or palate. Hosted by Anja Pownell, a German mum of three living in the UK, it brings together personal experience, practical guidance, and expert insight to help families navigate the cleft journey with more confidence and less overwhelm. After receiving a cleft diagnosis at her 20-week scan with her third baby, Anja set out to understand everything she could — from feeding and surgery to long-term care and development. Drawing on her own experience and conversations with parents and professionals, she shares the knowledge and reassurance she wished she had at the very beginning. From diagnosis and feeding to surgeries, speech, dentistry, and everyday family life, this podcast offers gentle guidance and real-life insight to support you and your child every step of the way.

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