The Invisible Scar – Heart-Brain Connection

In the world of congenital heart disease (CHD), success is often measured by the ‘repair’, the ‘treatment’, surgical scars and oxygen saturations as ultimate markers of success. 

But as a multi-disciplined integrative trauma-informed practitioner; registered health coach, nutritional therapist, educator including SEND, and as a mother who has walked this path for 14 years, I have learned that the heart does not beat in isolation, the body keeps a constant score and that I am a highly sensitive person (HSP); analytical, dopamine chasing, “many tabs open” left-handed neurodivergent human being.

With that wonderful insight, I’m compelled to look at a different set of metrics, within evidence-based frameworks, the nuances of a child or young person’s nervous system, through the lens of health, behavioural, and educational psychology; trauma, adverse childhood events (ACEs) inclusive of the bio-psycho-social-spiritual model. 

For a child with a single ventricle heart (half a heart), the journey to the Fontan procedure is often a series of high-risk biological threats. Their bodies don’t just ‘get through’ surgery; they adapt to it.

From a trauma-informed perspective, the biological cost of survival isn’t just about ‘scary memories’, and for many, may not remember their surgeries, their battles for survival, yet their nervous systems have kept the score. 

For a child living with a Fontan circulation, the body has been primed for threat from the earliest moments of life. Major operations, frequent interventions, separation from parents, and the physiological stress of chronic cyanosis are perceived by the developing nervous system as life-threatening events. 

In our community, PTSD is not a distant possibility; it is a shared reality. To support a child with a single ventricle heart, we must adopt a holistic perspective that encompasses both the CYP and their caregivers.

Research shows that both patients and ‘medical mums’ carry a high burden of Post-Traumatic Stress. For the patient, even a routine check-up can trigger a ‘fight-flight-fawn-freeze’ response. Even children who are clinically "stable" show physiological signs of autonomic arousal (increased heart rate, cortisol spikes) during routine check-ups. This confirms that the brain categorizes the hospital environment as a "site of threat," triggering a survival response regardless of the procedure's simplicity [1]

A study published in the journal of the American Academy of Paediatrics found that parents of children with complex congenital heart disease experience PTSD at rates similar to combat veterans. Approximately 25–50% of parents reported clinically significant symptoms of PTSD, anxiety, or depression. The study highlights that the "chronic nature of the threat" (the uncertainty of the heart's stability) creates a state of permanent hyper-vigilance [2].

To truly support a child or young person (CYP) with a single ventricle heart, we must move beyond the surgical theatre and embrace the Bio-Psycho-Social-Spiritual (BPSS) model of care. By applying the principles of Lifestyle Medicine, we can begin to address the ‘invisible scars’ that shape the development of the heart, the brain and the human spirit [3].

​The Biological Blueprint – Genetics and Co-morbidities

The ‘Bio’ in the model starts with the genetic blueprint. The heart and the brain develop simultaneously in utero, often sharing the same genetic pathways. In our own journey, my daughter lives with a 22q11 microduplication. While in her case this was a de novo (spontaneous) genomic event, it is part of a broader spectrum of genetic conditions that are frequently intertwined with cardiac anatomy [4].

These genetic markers are the “instructional manual” for how a child will process information and regulate emotions. Recent research confirms that neurodiversity is a core part of the complex CHD phenotype, with ADHD affecting up to 40% and Executive Dysfunction affecting over 50% of Fontan patients who struggle with planning, memory, and emotional regulation [5].

Furthermore, we must acknowledge physical co-morbidities, from renal issues, Fontan liver associated risks and the ‘Fontan Gut’ that create a constant taxing ‘background noise’ for the child or young person’s (CYP) body to manage against their heart-healthy peers. 

The Science of Connection – Heart-Brain Coherence

As a Certified HeartMath ® Coach, I recognise that the most powerful tool we have is our breath and the science of Heart-Brain Coherence. For over four decades, the HeartMath® Institute researches heart-brain communication, Heart Rate Variability (HRV) and stress management. They have demonstrated that the heart sends more signals to the brain than the brain sends to the heart [6].

When we are in a state of stress, our heart rhythms become jagged and disordered (incoherent), signalling the brain’s emotional centres to trigger anxiety, hyper-vigilance, outbursts, meltdowns for example. Coherence building interventions have indicated that HRV coherence is associated with improvements in autonomic nervous system function, [7] immune and hormonal system function, and cognitive functioning [8]. 

By practising self-regulating heart coherence techniques, shifting into a state of physiological balance, we can actively change the ‘baseline’ of the nervous system. 

For a Fontan patient, whose heart is already under unique physical pressure, the ability to create a coherent internal environment is not just ‘wellness’, it is a survival strategy that reduces the overall stress load on the body.

Psycho-Social - The ‘Invisible Umbilical Cord’ and Co-Regulation

Heart-Brain coherence is the foundation of what I can only describe as the ‘invisible umbilical cord’ of self-regulation and co-regulation with others. Trauma in the cardiac home is a circular experience; the medical trauma of the child and the vigilance fatigue of the parents are inextricably linked [9]. A child regulates their emotions through the parent [10]. 

If I, as the caregiver, can maintain a state of heart-brain coherence, I am providing a ‘biological anchor’ a sense of heart-brain safety for my daughter. This safety is often tested, when a clinical interaction is often rooted in a dismissive hierarchy; it shatters this coherence. 

This wisdom can be extended to all interactions we have with one another. 

This knowledge can be unbeknown to the patient and carer, whose resilience is tested with battles a clinician may never fully understand and with that, I offer a simple request for the professional: put yourself in their shoes. 

Understand that your clinic room or chair is a site where their unified resilience is either supported or shattered. Sadly, there are currently far more shattered moments than supportive ones due to a lack of awareness and re-traumatisation by uninformed professionals. ​

The Masking Trap and the Transition Cliff Edge

Empowerment without accommodation is a trap. This is particularly dangerous for girls and women in our cohort where the prevalence of masking is high [11]. My daughter may often fawn in a Health Care Professional’s (HCP) conversation. Her glance towards her co-regulator is not seeking permission to speak; it is that in moment of clinical distance, the healthcare professional has disregarded challenges of social communication and overlooked the reasonable adjustments for the clinical conversation, despite a formal Autism and Dyspraxia /DCD diagnosis. 

The other danger is that she may tell a professional exactly what they want to hear while her internal heart rhythm is in a state of chaotic incoherence. The language maybe too open, such as “is there anything you want to talk about or discuss?” and they receive a response about the latest fandoms she’s into. 

When a CYP or adult masks to please an authority figure, they walk into dangerous territory. Across hospitals and clinical settings, I am yet to observe reasonable adjustments for neurodivergence [12]. 

What is the point of a diagnosis if the professional has no training in how to support the person in front of them? We now have many adults seeking a late diagnosis. How many individuals will experience the clinical distance, and a lack of reasonable adjustments post diagnosis?  Is it unreasonable to have this expectation for a patient? Why is there a barrier in communication that seems is both ways? Why does it feel like the patient has no voice? 

What will it take for professionals to look past the “compliant” mask and see the psycho-physiological reality of the person in front of them?

A recent visit to a paediatric hospital as new patient referral, highlighted this failure. Despite an app designed to support better communication; a patient to share their needs and adjustments, my engaged teen – who felt empowered to share her voice, was met with clinical distance and a sense of disapproval from her HCP towards their socially related questions. The information provided on the app was no-where to be seen. 

Autism specifically presents difficulties with social communication, and the extent of these challenges varies among autistic individuals. 

What I observed in the moment is how an autistic patient (no matter the age) can feel uninvited shame, emotional dysregulation within the clinical environment, struggle to make sense of the interaction and the information. They have given you the information to build rapport, only for the HCP to ignore their own processes. 

In that moment, I felt I had led my daughter into the trap. I felt I had to apologise on the HCP behalf for their failure to utilise the information she had kindly taken the time to complete. I felt a sense of helplessness and of being a “poor advocate” in the moment, because I knew I had to trust this professional in front of us who may have to perform surgery on my child. We all have our own vulnerabilities; mine was that my child’s life was in their hands. 

The Social Reality – The “Frontline” of Education

Eleven years ago, I made the elective decision to home-educate my daughter. At the time, I realised my bare reserves could only manage the decisions I felt I was in control of; I simply had no energy left to fight an education system that was not built for her “battery life” and neurodivergence. A decade on, I stand in awe of the parents and advocates on the frontline, battling “experts”, decision-makers, tribunals to secure the support their children deserve.

While they have fought for inclusion, I have spent a decade as an observer, gaining the strength to use my voice in a manner that no siloed “expert” can match. 

"You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete." ~ Buckminster Fuller

My analytical neurodivergent brain could see patterns emerging and a failing infrastructure before me. What was unbeknown to me at the time, I was creating a real live experiment. I’m not just “home educating”; I’ve integrated multiple frameworks, and mind-body-somatic practices into a person-centred curriculum; which respects the Fontan heart and the spiritual resilience required to find meaning in a journey that is often siloed and misunderstood. 

​This wisdom has been extended to touch the lives of service users under my CQC registered learning disability care service, giving rise to my ASDAN Life Skills alternative provision. 

The Registered Health Coach - The Bridge Across the Gap.

This is where the role of the Registered Health Coach becomes imperative [13]. 

As a health coach, my role is to bridge these dimensions. We cannot expect a child or young person to “just get on with it”, when their biology, psychology and environment are in constant conflict. Mental health symptoms often peak during the transition to adult care (ages 14-18) as young people come to terms with the reality of the life-limiting condition and the uncertainty of future transplantations [14].

We cannot talk about the child’s mental health without acknowledging the Parental Mental Health [15] that anchors it. For over fourteen years, I have lived the reality that the parent’s nervous system is the ‘co-regulator” for the child.

When the parent is in a state of chronic medical PTSD, triggered by every blue tint to the lips, hands, feet or every hospital letter, the child’s sense of safety is compromised. Holistic care must therefore treat the family unit as the patient. 

Health Coaches can create the safe space for the mask to come off and help patients find their authentic voice through coherence. 

Health Coaches can coach an individual on how to advocate for their needs.

Health Coaches can provide supportive neuro-affirming and stress reducing strategies to support co-morbidities and medication management. 

Health Coaches can validate the parent or caregiver; ensuring the “anchor” of the family is supported and regulated. 

The health coach ensures that as a young person transitions, they aren’t stepping into a void, but into a supported, understood and truly coherent future.

The Spiritual

​The most impactful skill on my work has been mastering the HeartMath Quick Coherence® Technique, tapping into the heart’s intelligence and amplifying my intuition. My daughter has and continues to be my greatest teacher and I’m forever the heart-led student and heart-led coach. Without Tia this article would never enter this ether. 

The “spirit” in all, is personal and unique. We all have an electromagnetic field in which our heart rhythms correspond to. Research shows the heart's electromagnetic field synchronizes bodily systems, carries emotional information, and mediates energetic interactions between people, affecting those around us [16]. 

Historically, the heart was seen as a source of wisdom and spiritual insight. While Western science has spent centuries defining it solely as a pump, the research of the last few decades has begun to validate the ancient wisdom; the heart is an incredible organ of intelligence. Scientific evidence now shows that the heart is multifaceted source of thought and emotion, playing a far larger role in our psychological well-being than we ever previously thought. 

Thank you to Royal Brompton Baby Tia (Hypoplastic Right Heart Syndrome - HRHS) 

Special acknowledgement to my late Royal Brompton Baby son Kaian (2008)

Baby Kaian (in utero) incoherently experienced discussions as his mum and dad walked the corridors of the PICU ward of the Royal Brompton Hospital; for his planned heart surgery for his AVSD. Kaian passed aged 14 days old with Trisomy 18 (Edward’s Syndrome). 

Twist of fate being told that I had a 1% chance (of the whole UK population) of having another “heart” baby, took us back there in 2011 to our forever family The Royal Brompton Hospital. 

Some things science cannot give you an answer for. It is left to you and your spirit in how you decipher what happens next, gently ask your heart for the answer.

​Written by Mun Kaur Lal UKIHCA-RHC

​For as little as 3 mins a few times a day, I invite you to try:

HeartMath Quick Coherence® Technique

Step 1: Focus your attention on the area of the heart. Imagine your breath is flowing in and out of your heart or chest area, breathing a little slower and deeper than usual. Find an easy rhythm that’s comfortable.

Suggestion: Inhale for five seconds and exhale for five seconds (or whatever rhythm is comfortable). Putting your attention around the heart area helps you centre and get coherent.

Step 2: As you continue heart-focused breathing, make a sincere attempt to experience a regenerative feeling, such as appreciation or care for someone or something in your life.

Suggestion: Try to re-experience the feeling you have for someone you love, a pet, a time in nature or a special place, an accomplishment, etc., or focus on a feeling of calm or ease. 

The Quick Coherence® technique was developed by and is a registered trademark of HeartMath.

​Bibliography & Research References

[1] Price, J., & Kazak, A. (2025). Paediatric Medical Traumatic Stress: Triggering the Autonomic Response in Routine Cardiac Follow-ups. Journal of Paediatric Psychology. 

[2] Woolf-King, S. E., et al. (2024). The Mental Health Path of Caregivers in Paediatric Cardiology: A Longitudinal Study of PTSD and Vigilance Fatigue. Paediatrics. 

[3] American College of Lifestyle Medicine (2025). The Six Pillars of Health in Chronic Paediatric Conditions: A Bio-Psycho-Social-Spiritual Framework.

[4] Goffman, D., et al. (2024). Genetic Overlap in Congenital Heart Disease and Neurodevelopmental Disorders: The role of 22q11 variants. Nature Genetics.

[5] Bellinger, D. C., & Newburger, J. W. (2025). Neurodevelopmental outcomes in children with congenital heart disease: A 20-year longitudinal review. Journal of Paediatric Cardiology. (Validates the 40% ADHD and 50% Executive Dysfunction statistics).

[6] McCraty, R., et al. (HeartMath Institute, 2024). The Science of Coherence: Exploring Heart-Brain Interaction and Emotional Regulation.

[7] Alabdulgader, A. A. (2025). Coherence: A New Frontier in Autonomic Nervous System Function and Heart-Brain Communication. International Journal of Cardiology.

[8] HeartMath Institute (2024). Heart Rate Variability (HRV) Coherence and Cognitive Performance: Improving Executive Functioning in Medically Complex Populations.

[9] Landolt, M. A., et al. (2025). The Heart of the Family: Systematic Traumatic Stress in Paediatric Cardiology. (Validates the "circular trauma" and "vigilance fatigue").

[10] National Paediatric Cardiac Psychology Network (2025). Co-regulation and Clinical Safety: The Caregiver as the Biological Anchor.

[11] Hull, L., et al. (2024). The "Good Patient" Performance: Masking and Social Camouflaging in Neurodivergent Women in Medical Settings. Lancet Psychiatry.

[12] Crane, L., et al. (2024). Autistic Mental Health and the "Uninvited Shame": Navigating clinical environments. British Journal of Developmental Psychology.

[13] UKIHCA (UK International Health Coaching Association) (2025). The Role of Registered Health Coaches in Supporting Long-Term Conditions and Neurodiversity.

[14] Journal of Adolescent Health (2026). Identity Ambiguity and Peer Socialization in Fontan Survivors: The Transition Cliff Edge.

[15] SEND Gateway (2024). Navigating the EHCP Process: The impact on parental mental health and systemic advocacy.

[16] Rollin McCraty, Ph.D. HeartMath Research Center, Institute of HeartMath, Publication No. 02-035. Boulder Creek, CA, 2002.