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: [email protected]
• 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.

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.

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.

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, and what it was like finally having him back in my arms.

I also share what those first hours and days of recovery have looked like for us — including feeding, pain relief, his first night after surgery, the soft-food diet and some of the little practical things we've found helpful at home.

This is our family's individual experience at Alder Hey Children's Hospital, and post-operative protocols can differ between cleft teams. Always follow the advice given by your baby's own surgical team.

If your baby's palate surgery is approaching, I hope hearing exactly what those first few days looked like for us makes the unknown feel a little less daunting. 💛

References:

• Pyjama fairies: https://pyjamafairies.org/order-garments
• Spoons: https://amzn.to/4i3LYME (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.

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 Isla's first surgery and growing into Isla's Miles of Smiles. We talk about her padel tournament, summer fête and charity football match, which together have raised thousands of pounds, as well as why raising awareness of cleft is every bit as important to Laura as raising money. Laura also shares how the events have grown beyond anything she initially imagined, why Isla's big sister is such an important part of the journey, and her message for parents who have just received a cleft diagnosis.

References:

• Laura's Instagram: https://www.instagram.com/islasmilesofsmilesevent/
• Callie and her cleft (scroll down on the page): https://clapa.com/support-and-community/for-parents-and-families/antenatal-diagnosis/
• The Cleft Companion 1:1 support: https://stan.store/AnjaPownell/p/the-cleft-companion-pregnancy-and-first-year-

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.

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 psychosocial support built into their programme.

References:

• Webinar: https://m.youtube.com/watch?v=Dkg1alrqWBE&ra=m
• Prevalence of clefts: https://www.smiletrainafrica.org/what-are-clefts
• Nifty cup: https://laerdal.com/gb/products/simulation-training/obstetrics-pediatrics/nifty-feeding-cup/

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.

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 Maxillary Plates on Cleft Width Morphology in Unilateral Cleft Lip and Palate: A Prospective Intervention Study. Children (Basel). 2025 May 30;12(6):714. doi: 10.3390/children12060714. PMID: 40564672; PMCID: PMC12191339.

https://pmc.ncbi.nlm.nih.gov/articles/PMC12191339/

Dallaserra M, Pantoja T, Salazar J, Araya I, Yanine N, Villanueva J. Effectiveness of pre-surgical orthopedics on patients with cleft lip and palate: A systematic review and meta-analysis. J Stomatol Oral Maxillofac Surg. 2022 Oct;123(5):e506-e520. doi: 10.1016/j.jormas.2022.02.004. Epub 2022 Feb 10. PMID: 35151895.

https://pubmed.ncbi.nlm.nih.gov/35151895/

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.

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 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.

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. doi: 10.1038/s41415-023-5998-z. Epub 2023 Jun 23. PMID: 37349451; PMCID: PMC10287563.; https://pmc.ncbi.nlm.nih.gov/articles/PMC10287563/

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.

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 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.