Lynda Tellett, ACHD Service Lead

My friend Laura invited me to take part in an open water swimming event in Southampton - to swim 1.5k off a pontoon, past super yachts, and tall ships!

And so, at 7.00am on a bright sunny Sunday morning, we arrived at the docks with wetsuits and goggles - quite honestly questioning what we were doing! But what happened next was such a coincidence, it totally distracted us from the open water swim…

We met up with 2 other swimmers Roberta and Lizzie, shared swimming experiences and other tips for the open water. Laura had mentioned that I was a Cardiac Nurse, it then transpired Lizzie was also a nurse and she had congenital heart surgery in her early years, she showed us her sternotomy scar. Roberta then explained that her son was born with a heart condition. Incidentally, Laura’s husband, Barry, had also been through several heart operations and procedures over the years!

As well as being an Adult Congenital Heart Disease (ACHD) Clinical Nurse Specialist (CNS) at Southampton University Hospital Trust, I had only been in post 2 weeks as ‘ACHD Service Lead’ for Somerville Heart Foundation. I was thrilled to talk about this amazing national charity and all it does. Before we even got into the water, we had photos taken and pledged to write about our experiences for the charity’s magazine, Upbeat, and here they are!

Laura’s story

I first met Barry in the summer of 1974 when we were both in our twenties. He was finishing a year’s degree placement at a hospital in Hertfordshire for people with learning disabilities, and I had come from California to join the psychology team at a similar hospital nearby. Seeing his long hair, cheesecloth shirts and bell bottoms, I thought: My kind of guy. To begin with, it was all work-related. Discussions over coffee or lunch when the two hospitals held joint meetings, that sort of thing.

However, there was another story running in the background, as I found out when we first met outside work. ‘How about a swim and a picnic?’ It was one of those seventies’ summers when spells of hot weather were greeted with delight, and there was an open air pool a short bus ride away. We’d come dressed to splash, and as Barry took off his shirt, I saw a long scar reaching from the base of his neck all the way down his chest. He saw my look and gestured to the scar. ‘I guess I’d better tell you about the zipper.’

As he talked, I felt like I’d fallen down a rabbit hole into an alien land. ‘Abnormalities’ at birth, subsequent SBE (now known as IE, Infective Endocarditis), replacement aortic and pulmonary valves, homograft’s, autografts, National Heart Hospital, and more. My first reaction was panic, and he could see it. ‘Sorry, I didn’t know when to tell you, I thought you’d run a mile.’

Well, I didn’t run, but that conversation was the first step on my road to understanding and adjusting to the realities of becoming involved with someone living with ACHD. It started that day with my first big mistake: ‘So, are you actually OK to swim?’ For that, I got a dusty stare. Without a word, Barry plunged in, thrashing clumsily, leaving me to follow. As I scurried through the water to catch him up, I reminded myself that he was an adult, who would make his own choices and that, for him (everyone’s different, I know), there was a fine line between supportive understanding and unhelpful interference. That was so hard, I can still recall the anxiety I felt, the questions rolling around in my head, my own need for information and for the reassurance which was nowhere to be found.

The way Barry was leading his life seemed to challenge all the preconceptions I had about heart conditions. He played football and cricket and was an all-round good sportsman (except I discovered that the reason he was a rubbish swimmer was because he hadn’t learned properly as a child). We went to parties and big events, and there seemed to be no restrictions at all. Over the following months, I became less nervous. Barry said he’d been told to lead a normal life, and that was what he intended to do. He’d had one of the earlier operations replacing his pulmonary valve with human tissue and the aortic valve with his pulmonary. Not having to take Warfarin, he said, freed him to take risks, such as playing contact sports, that would have been out of the question with mechanical valves.

Towards the end of our first year together, I began to feel more balanced. Barry’s heart, which had seemed to fill my brain, shrunk back to normal size, emotionally. I no longer thought of him as somehow fragile – this was especially important when our relationship started to become more intimate. As I look back, I chuckle at some of the scenarios I imagined, in which I was literally the cause of death. But it wasn’t funny at the time, and again, how I longed for someone to talk to about this delicate subject.

We married in 1975, moved to California, and started to think about becoming parents. This triggered all my suppressed anxieties about the future, and I decided to do something about it. Without telling Barry, I went to see his consultant. It was the best $200 I’ve ever spent (no NHS in California!), and my first experience of getting emotional support for myself. Dr. M. listened, understood, and gave me some clear answers. I learned that it was too soon to be sure about re-do or survival timescales for homograft surgery, but that all early indications were positive. It was likely that Barry would have to have a re-do at some point, but if he maintained a healthy lifestyle, there was no reason he shouldn’t have many years ahead of him.

That was enough for me – my tolerance of uncertainty had greatly improved, and I was able to face my fears and throw away the Pill. It was years before I told Barry about that visit, but we did talk about the implications of being parents. Our daughter was born in 1976 and our son in 1978.

Work brought us back to the UK, and we settled in Bournemouth, later in Southampton. This stroke of luck brought us into the care of the Cardiac Teams at UHS, and suddenly the integrated support I’d longed for was there. Barry was able to transfer from the National Heart Hospital (now the Royal Brompton) to Southampton, which made a huge difference to us.

Then one evening in 1998, we were watching TV. I rested my head on Barry’s chest and heard a clicking double rhythm. It’s hard to describe, but I can hear it in my head now. The original valves were failing. A re-do followed, and this was my first time going through the process at his side. It’s nearly 25 years ago now, and I still have painful images. Barry suffered from post-op blues, which I soon discovered was fairly normal. However, it was devastating to hear him sobbing, ‘What was it all for?’, as the children (teenagers now) looked on in bewilderment at their ‘indestructible’ father.

The cat refused to leave her spot beside him on the bed and I had to physically take her outside to pee (we thought we might rename her Florence Nightingale). I held back tears as I watched my fast-bowler husband start on his rehab journey with a five-metre totter down the ward. All new territory for me – and for him. Having had his first surgery in the early seventies, the ‘up-and-at-’em’ approach of the late nineties was a bit of a shock.

The decades have rolled on and so have the procedures: another re-do, ablation, cardioversion, ICD, INR, remote transmissions. But these were punctuations in our lives, not the main story. Our children grew up, moved out, moved in again, moved out again to start their own families. We retired. Football and cricket have become spectator sports for Barry as playing golf has provided new possibilities. I have to admit, I’m no more obsessed with golf myself than he is with swimming, which is my sport of choice, so we go our separate ways there.

However, the gym brings us together, as does walking the dog and being with our grandchildren. Sometimes when I look across at him churning out the miles on the stationary cycle, getting tangled in the dog’s lead, or coaching our grandson’s bowling, my own heart swells with affection and pride. And gratitude at nearly sixty years of amazing care and support by the professionals, volunteers and others who have got us here.

Roberta’s story

I’ll never forget that feeling of wanting the earth to open and swallow me up, when my husband and I were told our 4-month-old baby boy, Thomas, had a heart condition and would need open heart surgery before he turned 2 years old. He was diagnosed with

Tetralogy of Fallot, a congenital condition identified by 4 issues; a hole between the 2 lower chambers; a narrowing of the pulmonary valve and main pulmonary artery; an enlarged aortic valve; and thickening of the right ventricle wall.

Undetected in vitro, the first indication we had was during his newborn hospital checks. At a robust weight of 9 lb and having adequate ECG readings we were discharged after 2 days but told to expect an invitation letter for a follow-up cardiac appointment since he had a heart murmur. I was convinced all was well. A nephew of mine had had a heart murmur at birth that went away after a few weeks and our new, perfect little baby was going to have the same. Not the case… After what felt like the longest appointment ever due to extensive sonography at every angle across his tiny chest, the earth-shattering announcement was delivered.

It felt overwhelming at times as relatively new parents to be responsible for a life that needed a critical broken part fixed. The date for his surgery would depend on how he developed and ideally the closer to 2 years old was preferable. Living in London at the time, our follow-up care was at the Royal Brompton hospital, a world leader in congenital heart disease. They explained to my husband and I about the possibility of our baby having ‘cyanotic spells’, behaviour that indicated low oxygen saturation. It was to our horror that he did experience one of these while I breastfed him at a motorway service station in January 2013. The fast response ambulance was on site within 10 minutes and when they detected an oxygen saturation of only 40%, we were whisked to the local hospital in Chester to spend the night to keep him under observation. Soon after returning to London his surgery was scheduled for February.

To us our baby was a tiny, fragile, bundle to face such an ordeal. It was only when he was admitted to the paediatric ward and surrounded by really tiny new borns that we realised how critical some heart conditions are and how thankful we were that our child had had a full term in vitro and 6 months of growing pre-operation.

We spent 10 days at the Royal Brompton living in parent accommodation near the ward, always one of us at his bedside throughout the day and on a 24-hr shift post operation. It really hit home how much families can be shattered when I met a lady clearing her belongings from the kitchen one day, who had lived at the hospital for 18 months as her toddler awaited a heart transplant. It never came, her child had passed away, it was her time to leave…

The brilliance of the paediatric cardiologist’s we have here in the UK is incredible. So much so that the planned approach to our son’s operation was changed during surgery to be less invasive on his valve repair than originally planned. 8 hours of surgery and 3 on the by-pass, with a wonderful surgeon able to think on his feet, means that Thomas may not need further surgery later in life. This would have been necessary for a valve replacement if the original procedure had been followed.

When Thomas turned 2.5 and his little sister was 6 months, my husband’s job took us to live in Houston, Texas for 6.5 years. Thomas’ annual check-ups continued there, indicating his heart sustained a healthy rate of growth. His pulmonary valve remains moderately tight, but only to the degree that someone could manage for a lifetime without this being detected.

We wanted him to know about his heart as soon as he was old enough to begin to understand and it became part of many conversations of much pride for him at an early age. We explained it did not make him different from anyone else, if anything his chest ‘zipper’ and 3 ‘bullet holes’ across his tummy (the small circular scars made by the surgical drainage tubes) made him extra cool! Now 10 years old Thomas is a happy, healthy, boy that regularly takes part in sports including rugby, swimming, karate, trampolining, running and of course annoying his little sister…although she has the top score in that one!

We moved back to the UK in July 2021 and settled in beautiful Winchester. We feel so fortunate to have such incredible NHS cardiac care close by in Southampton cardiology unit, a Level 1 care centre. Thomas will have his first follow-up there next month. He’s looking forward to it, although I think it’s more the half day off school and promise of the previsit lunch, that he’s excited about! waking up in hospital afterwards cuddling my snoopy while the nurse helped me eat some banana custard!

We pray that Thomas’ heart continues to stay strong and won’t need any further interventions, but like most things in life, we have no guarantees. It has been so fortunate to learn about Somerville Heart Foundation and the work they do to support adults and young people with congenital heart disease.

I was in hospital for a few days post operatively so that I could be monitored and for the physio to help me walk upright again. My sternum (breastbone) was separated to gain access to my heart during surgery. I still remember being so scared to get out of bed and try and walk because of the pain in my chest. The physio I was under was a very intimidating older lady who I’ve since learnt had quite a reputation! I can still hear her shouting ‘shoulders back, bottom in’ while I was trying to walk up and down the ward, but her determination definitely aided my recovery.

My hospital convalescence was thankfully uneventful, and I was able to start school with my peers, albeit a term late. I don’t remember being self-conscious, embarrassed or worried about my scar at that time, during my teen years and now at 43 I’m proud of my ‘zip’ scar. It actually looks quite like an exclamation mark due to the small chest drain scar just below the main vertical operative wound line. I have been left with a slightly protruding rib on the L side of my upper chest where the bone didn’t remodel in line with the other side. A small price to pay for the surgery being otherwise fantastically successful.

Lizzie’s story

Well maybe our start in life really does shape how we live thereafter.

I was born in 1979 with an atrial septal defect (a hole in one of the top chambers of my heart that resulted in less efficient pumping of blood from my heart to my vital organs) and this was discovered at birth. Back then scans were less able to pick up all congenital cardiac defects and as no one in my family had ever had any cardiac issues, it was totally unexpected for my poor parents. I was referred to a team of paediatric cardiologists who monitored my growth and cardiac health as I developed and by the age of 3 it was decided that I would need surgery. Many of these ‘holes’ are self-limiting but mine was in fact growing and becoming more of a problem. I don’t think I ever got to the point where I was short of breath or looking blue around the peripheries but aged 4 years, I had the surgery to fill the hole. My mum describes it as both the worst and best day of her life. All I remember is being taken to the Beefeater for a treat lunch first and

During a routine GP appointment in my 20s it was picked up that I have a mitral valve heart murmur, but this hasn’t caused me any issues. After gaining access to my surgical notes, it was discovered that this murmur was not new and had in fact been present since my operation.

I have been fortunate and had 2 very healthy pregnancies and during these gestational periods I was again under the watchful eye of the cardiologists. I was monitored closely during my first natural labour and the only restriction was that I was not to push for longer than an hour. Both my children were also monitored via scans in utero but were thankfully born with very healthy functioning hearts.

The stay in hospital during my heart surgery was where my ambition to be a nurse originated. In my mum’s loft there is still a piece from my reception class yearbook where I wrote that I wanted to be a nurse and help people. That dream transformed into my vocation, and I am proud to say that I have been an Emergency Nurse Practitioner for

21 years. I am also working as a holistic life coach where I try and help my clients really ‘feel happy’ in all aspects of their life.

After surviving my congenital heart defect, I have always strived to keep physically fit as I feel I sort of owe it to my body to look after it given the second chance I was given. I am a huge fan of cold-water swimming which enriches my mind and body and have recently completed my first organised sea swim event where I met some wonderful likeminded ladies. One even noticed my scar which is how this article came about.

Live life the best you can as today is the present and tomorrow is the true gift.

Back to Lynda!

Incidentally, the swim went well, and we have become friends not just through open water swimming but, more importantly, we all have a common interest in congenital heart disease and enjoying life to the full.

Dr Nang Kyi, a Southampton Consultant Cardiologist said to me this week ‘Lynda, you are never far from congenital heart disease, it is a small world’ and I think she’s right!!

Finally, educating people with congenital heart disease to live healthy and active lives is a part of my role as a nurse. So, I do try to practice what I preach. The government advises us that as adults we should perform moderate intensity exercise for at least 150 minutes a week. https://www.gov.uk/government/ publications/physical-activity-guidelinesadults-and-older-adults

If this is possible, that is just 30 minutes 5 times a week, swimming, cycling and brisk walking all qualify for this. This is what we advise our patients in clinic.