The Cleft Mama Podcast

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...

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...

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....

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 writt...

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 pre...

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...

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 outsi...

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 tech...

What is cleft palate surgery actually like — and what happens in those first few days afterwards? In this episode, I'm sharing our experience of Mika's cleft palate repair while it's still incredibly fresh — just five days after his surgery. I talk you through how we prepared in the weeks beforehand, what happened on surgery day, handing him over for his operation, the wait while he was in theatre...

When Laura found out at her 20-week scan that her daughter Isla would be born with a cleft lip, she felt uncertain, overwhelmed and even guilty. But once Isla arrived, Laura says so much of that worry simply melted away. In this episode of The Cleft Mama Podcast, Laura shares how Isla's cleft journey inspired her to start fundraising for CLAPA — beginning with a 700 Challenge around the time of Is...

Anja shares what she learned from a webinar by a paediatrician in a cleft centre Ghana on breastfeeding babies with cleft lip and palate — including the Nifty cup, hand expression, and why the clinic starts from "can we help this mum breastfeed?" rather than assuming it's impossible. The webinar included real outcome stats (50% exclusive breastfeeding at 6 months for cleft babies) and the psychoso...

An explainer episode on the surprising role the tongue plays in jaw growth and cleft widening — and why some cleft centres (though not the UK) use passive or active plates before surgery. It covers the research on plate effectiveness and why the evidence is still inconclusive. References: Bühling S, Selge HM, Eslami S, Seifert LB, Sayahpour B, Plein N, Sader R, Kopp S. Impact of Active and Passive...

Anja's husband Chris shares the diagnosis day, the shock of seeing Mika's mouth for the first time, doing all the night feeds by finger-feeder and bottle, surgery day at the hospital, and his advice to other dads: don't Google, talk to the cleft nurses. Chris' Instagram: https://www.instagram.com/thathomeschooldad/ Disclaimer: Statements made in this podcast do not constitute medical advice. The i...

A full walkthrough of the UK's centralised cleft care system — lip and palate repair timing, alveolar bone grafts, the CRANE database and audit clinics, and why the pathway isn't a prediction of what your own child will need. Reference: Dudding T, Martin S, Popat S. An introduction to the UK care pathway for children born with a cleft of the lip and/or palate. Br Dent J. 2023 Jun;234(12):943-946....

Mariam talks through her daughter's Pierre Robin sequence diagnosis, the NG tube and NPA breathing tube, sleep studies at Great Ormond Street, and the moment she pushed back on "average" timelines to get her daughter's breathing tube removed sooner — plus honest talk about pumping burnout and formula guilt. Disclaimer: Statements made in this podcast do not constitute medical advice. The informati...

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 r...

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 recommen...

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...

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 f...

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 par...

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...

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 child...

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...

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...

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 als...