When Sarah's son was diagnosed with a unilateral cleft lip and possibly cleft palate at the 20-week scan, she was told that breastfeeding wouldn't be possible. But instead of accepting that as the end of the story, she spent months researching, experimenting and finding a different path.

In this episode, Sarah shares the incredible journey that eventually led to direct breastfeeding after palate repair. We talk about expressing milk, finger feeding, supplemental nursing systems (SNS), maintaining milk supply, lip and palate surgery, and why patience and persistence were key.

Whether you're hoping to breastfeed, provide expressed breastmilk, or simply want to understand the different feeding options available for babies born with a cleft lip and palate, this conversation is full of practical advice and hope.

References:

• Sarah's blog: https://cleftfeeding.blogspot.com/
• Courses by Ulrike Giebel (in German for now):
  • For parents: https://payhip.com/b/oeBOX
  • For healthcare professionals: https://payhip.com/b/SlOwG
• Medela SNS: https://amzn.to/44pzOpc
• Haakaa SNS: https://amzn.to/4aJ1ZmH

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.

In this very first Ask The Cleft Mama Q&A, I'm answering some of the questions I've been asked most often by parents in the cleft community.

I talk about: 💛 The hardest part of receiving my baby's diagnosis 🍼 Preparing for feeding and harvesting colostrum 📚 Where to find trustworthy cleft information (and why I'd avoid Google!) 😊 When things started to feel easier 🍼 Which bottles I'd recommend buying before birth ❤️ Plus a few questions about my son, the podcast and balancing family life.

Whether you're newly diagnosed or already navigating life with a baby born with a cleft, I hope these answers help you feel a little more prepared and a little less alone.

References:

• Anja's Instagram: https://www.instagram.com/thecleftmama/
• Anja's email: [email protected]
• Courses by Ulrike Giebel (in German for now):
  • For parents: https://payhip.com/b/oeBOX
  • For healthcare professionals: https://payhip.com/b/SlOwG
• Scientific publications search: https://pubmed.ncbi.nlm.nih.gov/
• CLAPA welcome pack requests: https://clapa.com/support-and-community/for-parents-and-families/welcome-packs/
• MAM wide neck Size 3 teat and bottle: https://amzn.to/4dpgwFF
• MAM wide neck Size X teats: https://amzn.to/4dtVjth

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.

In this second episode exploring the work of the Cleft Collective, I take a closer look at three fascinating research studies that are already helping shape the future of cleft care. We discuss: 🧬 Whether giving more antibiotics after cleft palate surgery reduces the risk of fistulas. 🧬 Why left- and right-sided clefts may not be as similar as we once thought. 🧬 What research tells us about the wellbeing and quality of life of parents raising children with a cleft. One of my favourite findings is that, by the time children are five years old, many parents actually report a quality of life that is as good as—or even better than—the general population. It's a hopeful reminder that while the early days can feel overwhelming, things really do get easier.

References:

Cleft collective publications: https://www.bristol.ac.uk/dental/cleft-collective/families/publications/

1. Davies, Alex MBChB, FRCS(Plast)*,†; Davies, Amy MSc†,‡; Main, Barry PhD, MFDS, FRCS(OMFS)‡,§; Wren, Yvonne MEd, PhD, CertMRCSLT†,‡; Deacon, Scott MOrth, MDTFEd, FDS(Orth)*; Cobb, Alistair FRCS(OMFS), FDSRCS(Eng), MFSEM(UK)*; McLean, Neil BSc, MD, FRCS¶; David, David AC, MD, FRACS¶; Chummun, Shaheel MBBS, MASurg(Cranio), FRCS(Plast)*. Association of Perioperative Antibiotics with the Prevention of Postoperative Fistula after Cleft Palate Repair. Plastic & Reconstructive Surgery-Global Open 12(2):p e5589, February 2024. | DOI: 10.1097/GOX.0000000000005589 https://journals.lww.com/prsgo/fulltext/2024/02000/association_of_perioperative_antibiotics_with_the.20.aspx
2. Fell M, Fitzsimons KJ, Hamilton MJ, et al. Cleft lip Sidedness and the Association with Additional Congenital Malformations. The Cleft Palate Craniofacial Journal. 2025;62(9):1504-1515. doi:10.1177/10556656241261918; https://journals.sagepub.com/doi/10.1177/10556656241261918
3. Nicola M Stock, Debora Blaso, Paul White, Laura Shepherd, Bruna Costa, Karine Edme, Richa Aspland, Matthew Hotton, Longitudinal psychological well-being in caregivers of young children with cleft lip and/or palate, Journal of Pediatric Psychology, Volume 50, Issue 9, September 2025, Pages 831–842, https://doi.org/10.1093/jpepsy/jsaf029; https://academic.oup.com/jpepsy/article/50/9/831/8126536

You may have heard about the Cleft Collective shortly after your diagnosis or after your baby was born, but what exactly is it? In this episode, I explain the UK's Cleft Collective research programme, the largest cleft lip and palate research study in the world. We cover what information is collected, why researchers are interested in biological samples and questionnaires, how the CRANE database fits into the picture, and how this research is helping improve care for children born with a cleft. Whether you're considering taking part yourself or are simply curious about how cleft research works, this episode will help you understand how families are helping shape the future of cleft care.

References:

• Contact me: [email protected] or https://www.instagram.com/thecleftmama/
• Cleft collective: https://www.bristol.ac.uk/dental/cleft-collective/

In this episode, I'm joined by Rachael Reedman, mum to Anya, who was born with a complete bilateral cleft lip and palate. Rachael shares her experience of receiving a prenatal cleft diagnosis, the emotional impact of the language that was used, and how that shaped her pregnancy journey. We discuss her work helping train sonographers, improving the way diagnoses are communicated, and why giving parents hope alongside information is so important. We also talk about Smile Train, raising a child with a cleft, preparing siblings, school, confidence, and finding unexpected strength through the cleft journey.

References:

• · Smile Train CCAC: https://www.smiletrain.org.uk/community-programmes/cleft-community-advisory-council
• · Jack's new smile: https://amzn.to/4fNt2AH
• · Anya's story on Instagram: https://www.instagram.com/cleft_cuteness/?hl=am-et

Lip surgery can feel like one of the biggest milestones on the cleft journey. In this episode, I share everything I'd learned from my son's cleft lip repair. From preparing in the weeks beforehand, packing for hospital, and navigating the day of surgery, to feeding, pain relief, wound care, and recovery afterwards. This episode combines advice from our cleft team, my own research, and our family's recent experience to help you feel more prepared and less overwhelmed as your baby's surgery approaches.

References:

• Lily's super smile: https://www.ebay.co.uk/itm/236810854082
• · Jack's new smile: https://amzn.to/4fNt2AH
• · Besonders wenn sie lacht: https://www.amazon.de/Besonders-wenn-lacht-Kindersachbuch-Lippen-Kiefer-Gaumenspalte/dp/3902943386
• · Pyjama fairies: https://pyjamafairies.org/order-garments
• · 9 cleft services in the UK: https://clapa.com/what-is-cleft-lip-palate/about-nhs-cleft-services/
• · Kelo-cote gel: https://www.boots.com/kelo-cote-scar-gel-treatment-6g-10259814

In this episode, I speak with Ashleigh Baker from Indiana, USA, who was born with a cleft lip and palate and went on to become a nurse. Ashleigh shares her memories of surgeries, speech therapy, growing up with a visible cleft, and finding lifelong friendships through a craniofacial summer camp.

We also talk about her work with Smile Asia, where she travels to underserved communities to help children and adults receive life-changing cleft surgery. Ashleigh offers a unique perspective as both a former cleft patient and a healthcare professional, sharing hope, encouragement, and a reminder that no dream is out of reach.

References:

• Camp About Face: https://www.rileychildrens.org/support-services/camp-about-face
• · Smile Asia: https://smileasia.org/
• · Operation Smile: https://www.operationsmile.org.uk/
• · Smile Train: https://www.smiletrain.org.uk/
• · Mercy Ships: https://www.mercyships.org.uk/patient-donation/
• · Ashleigh's instagram: https://www.instagram.com/carpe_diem_chroniclz/

In this episode, I'm joined by Tiffany Pritchard, who shares her experience of growing up with a cleft lip and palate. We talk about surgeries, speech therapy, confidence, school life, and how her cleft affected her growing up — but also how she eventually found her voice through performing arts, television, radio, and advocacy work. Tiffany shares honest and encouraging insights for both parents and young people navigating the cleft journey, including why support groups matter so much and how appearance becomes only a tiny part of who you are.

References:

• Catfish UK:
  • YouTube: https://youtu.be/lGEtb9N4DzE?si=iSLFKZxJlmloaNtH
  • Apple TV: https://tv.apple.com/gb/episode/jay--layla/umc.cmc.3brn1elmg1017qenoqaey7xos?showId=umc.cmc.77s0lwb4w7lrtckxp5fg0w4xy
• Tiffany's Facebook page: https://www.facebook.com/TalksTiffany
• Radio interview: https://www.facebook.com/reel/1575386610393535
• CLAPA support for children: https://clapa.com/support-and-community/for-parents-and-families/support-for-your-child/
• Tiffany's Instagram: https://www.instagram.com/misstiffanylouise/
• Tiffany's TikTok: https://www.tiktok.com/@tiffanypritchard

Feeding a baby with a cleft can feel overwhelming at first — especially when it comes to choosing the right bottle. In this episode, I walk you through the most commonly used bottles for babies with a cleft, including MAM squeezy bottles, Dr Brown's bottles, and other alternatives. I explain how they work, why to use them, and what to consider when trying to find the right option for your baby. We also cover feeding techniques, positioning, and practical tips to make feeding easier and more effective. As always, this is based on my own research and experience — and the most important thing is finding what works for you and your baby.

References:

• Bottle feeding guide: https://stan.store/AnjaPownell/p/bottle-feeding-guide
• CLAPA shop: https://clapashop.myshopify.com/
• CLAPA welcome pack requests: https://clapa.com/support-and-community/for-parents-and-families/welcome-packs/
• Medela special needs feeder / Haberman: https://amzn.to/4uaKNOJ
• MAM wide neck Size 3 teat and bottle: https://amzn.to/4dpgwFF
• MAM wide neck Size X teats: https://amzn.to/4dtVjth
• NUK First choice 6+ latex teats Size M: https://liki24.co.uk/p/first-choice-plus-latex-nipple-6-months-2-pieces-nuk/ (delivery from Romania, see if you can find local alternative!)
• NUK First choice 6+ latex teats Size L: https://amzn.to/3OMVI1A
• Combine with any NUK First choice bottles, such as:
  • Single 300 ml bottle: https://amzn.to/4eXl0oc
  • 2x 150 ml, 2x 300 ml bottles: https://amzn.to/3PiGbXo
• NUK Nature Sense bottles with size M teat: https://amzn.to/4n5ZnUE
• NUK Nature Sense teats:
  • Size M: https://amzn.to/4f2wKps
  • Size L: https://amzn.to/4u3sieE
• RCT comparing vented versus non-vented teats: https://link.springer.com/article/10.1186/s12887-018-1092-0
• RCT comparing vented teats versus vented bottles: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2846955

Contains affiliate links

In this episode, I'm joined by Kate Stapley, mum to Harry, who was born with a cleft lip. Kate shares her journey from a difficult pregnancy and receiving a cleft diagnosis at the 20-week scan, through to surgery and the emotional process that followed.

We talk openly about guilt, uncertainty, and the grieving process, as well as the moment she fell in love with her son's "forever smile". Kate also shares how finding support through CLAPA and connecting with other parents made a huge difference — and how she now gives back by supporting others on their own journey.

References:

• · CLAPA website: https://clapa.com/
• · Pyjama fairies: https://pyjamafairies.org/order-garments
• · Kate's Facebook page: https://www.facebook.com/groups/957410978239719