The ‘Beating Heart’ - Beyond the Magical Operation

​The expression "Health Coaching: The Beating Heart of Future Healthcare" is frequently used in wellness, integrative medicine and by our very own CEO, Isabella Natrins, of the UK & International Health Coaching Association (UKIHCA). It describes the vital, human centred role health coaches play in creating modern, sustainable care. 

Today, however, I want to shine a light on the literal ‘beating heart’ of patients, families, and advocates who navigate the world of congenital heart and lung disease. For those of us living this reality, health coaching isn’t just a professional ‘beating heart’ – it is the lifeline that sustains us when the clinical pathway ends; or the future rests on uncertainty, changes, and lifesaving interventions including transplantation for our cohort population. 

For over fourteen years, I have lived in the quiet, rhythmic hum of a life defined by a Fontan circulation. As a ‘medical mum’ to a daughter born with Tricuspid Atresia and a hypoplastic right heart (half a heart), my maternal intuition has be forged in the trenches of PICU, high-dependency units and the complexities of palliative surgeries. I have witnessed the ‘magical’ operations - the breath-taking skills of our surgeon who re-plumbed my daughter’s heart to sustain a life that once seemed impossible.

​But as a mother of a child living with a single ventricle heart; navigated the series of palliative surgeries; I also know that a successful surgery is not a ‘cure’. It is a passport to a different, more complex way of living and being.

The Gap in the System – Transplants in Trouble

​A recent BBC File on 4 investigation, The Battle for Hearts and Lungs - Transplants in Trouble, has pulled back the curtain on a sobering reality; the UK is lagging behind. While we excel at the immediate, life-saving intervention, our infrastructure for long term “wraparound” care and transplantation is under immense strain. 

Patient advocate Jess Jones, who has spent a decade investigating the transplant system, summarised the crisis perfectly:

“There’s no point doing incredibly life-saving magical operations with incredibly skilled surgeons and then not investing longer term in what’s really needed to keep these people well and to have good longer-term outcomes.” Jess Jones (patient advocate)

Having previously lost my baby son to Trisomy 18, as a bereaved mother, it pains me to say (‘no point’) but she speaks truth.

As a registered trauma-informed health coach, nutritional therapist, SEND Home Educator, I see this gap every day. 

We are keeping children alive through surgical brilliance, but we are failing to provide the holistic, long-term support – trauma-informed practices, neuro-affirming practices, nutritional, psychological, and systemic, that allows them to truly thrive as they transition into adulthood. 

The “wraparound care” Jess Jones calls for is exactly where trauma and neurodivergent informed health coaching and nutritional therapy sit. It is the support that bridges the gap between hospital discharge and a high-quality life. It’s about managing the “Fontan Gut,” supporting the neurodiverse brain, and regulating a nervous system that has been through the trauma of multiple open-heart surgeries and cardiac catheterisations. 

We must move the conversation from ‘How do we keep the heart beating?” to “How do we support the whole human?”

​In the coming weeks, I will be exploring the specific, often invisible challenges our single-ventricle community faces – from the high prevalence of neurodiversity to the unique nutritional needs of a Fontan circulation. It is time we invest in the “longer term” to ensure that the “magical operations” of today lead to the flourishing lives of tomorrow.

A Lifeline Under Pressure

​In the UK, we are fortunate to have one single, dedicated charity for our community: Little Hearts Matter. Like much of the charitable sector, LHM is facing the brunt of making cuts and economic uncertainty. For a small, specialised charity that provides a lifeline – from antenatal diagnosis through to adult congenital care – these challenges are significant. Now, more than ever, we must try to protect this vital resource, to ensure that no family has to walk this complex path alone. 

If we have the pleasure to work together now or in the future; be sure to know the investment you make in yourself; will be extended to LHM. With a minimum of a 3% social responsibility pledge to LHM which is donated monthly to support this vital work.

If you would like to know more about the essential work of Little Hearts Matter, or to access their specialist resources, please visit their website: www.lhm.org.uk  

If you would like to donate: please click here: https://lhm-donate.raiselysite.com

Visit Heart//Work Project: See life through the eyes of adults living with half a heart. 

Written By: Mun Kaur Lal - Powered by a Royal Brompton Baby Heart

Sources:
File on 4 Investigates - The battle for hearts and lungs: Transplants in trouble. - BBC Sounds 
​UK transplant system, once world-leading, now lags behind - BBC News