The Cost of Survival

Nobody told me surviving would be the easy part.

When I was born with transposition of the great arteries, surviving was never guaranteed.

Thanks to pioneering surgery, I did survive.

Nobody ever told me what survival would cost.

When we talk about medical breakthroughs, we celebrate survival rates, successful operations and life expectancy. We celebrate the children who beat the odds.

What we rarely ask is what happens next.

What happens when those children grow up?

What happens when they become parents, carers, homeowners and people responsible for someone else’s life? What happens when the operations that once saved them begin to fail decades later?

I am one of that first generation

When I look back over my family, I see generations of women whose lives have been shaped by illness, disability and caring. My grandmother lived with multiple sclerosis. My mum, an only child, watched illness gradually reshape her own family before becoming a mother herself.

Then there was me.

I was born a complex congenital heart defect. The pioneering surgery that saved my life gave me something extraordinary: the chance to grow up.

But congenital heart disease isn’t something you leave behind.

It grows older with you.

Today, I live with advanced heart failure. Since entering the transplant pathway last August, I have undergone extensive transplant assessment, stenting of my superior vena cava, implantation of an implantable cardioverter-defibrillator and, most recently, catheter ablation. Every day I take a growing list of medication to keep my heart working for as long as possible, and I am incredibly fortunate to be under the exceptional team at the Freeman Hospital, whose expertise and compassion have carried me through one of the most uncertain periods of my life.

I now live with the knowledge that I may soon be listed for a heart transplant.

That should have become the centre of my world.

Instead, I haven’t really had time to process it.

Not because I don’t understand what it means.

Because life hasn’t given me the chance.

I became a mother in 2002.

My daughter, Francesca, was born with a rare chromosome deletion and duplication. She is non-verbal, has profound learning disabilities and highly complex medical needs. She depends on other people to understand what she cannot tell them, to recognise when she is frightened or in pain and to fight for the care she deserves.

For more than twenty years, that person has been me.

People often imagine unpaid caring as helping someone you love.

The reality is very different.

I coordinate NHS Continuing Healthcare, social care, multiple hospital teams, safeguarding, carers, housing, education and countless appointments. I spend hours every week writing emails, attending meetings and trying to join together services that too often operate in isolation.

Somewhere along the way, I stopped simply being Mum.

I became the person responsible for making sure every part of the system spoke to every other part. When it didn’t, I became the bridge between them.

We have become very good at saving lives. We have become far less good at supporting the lives we save.

That, to me, is one of the greatest challenges facing modern healthcare.

Medicine has achieved extraordinary things. Children born with conditions that were once fatal are now living into adulthood. They become parents, carers, neighbours, professionals and taxpayers. They build lives that previous generations were never expected to have.

But survival is only the beginning.

My daughter survived too.

She received a diagnosis.

But a diagnosis is not a future.

Families need therapy, communication support, skilled professionals, meaningful education, opportunities, respite and hope. Too often we celebrate that someone has survived, then quietly leave families to build the rest of life alone.

Throughout my own deterioration, my cardiac teams have repeatedly written about the importance of supporting me as an unpaid carer. They understand that the relentless demands placed upon me are simply not compatible with someone living with advanced heart failure.

Yet despite countless letters from cardiologists, heart failure specialists and other professionals over the years, I have often felt that the reality of my situation has not been fully understood.

Too often, the conversation becomes about whether I can continue coping.

I think the more important question is:

“How can we help you?”

There have been times when I have felt that the complexity of our situation became something to manage rather than a family to support.

The answer cannot simply be, “If you can’t cope, someone else will care for her.”

Caring for Francesca is not interchangeable.

It has taken a lifetime to understand her communication, her behaviour, the subtle signs that she is becoming unwell, what calms her, what frightens her and how to keep her safe.

That knowledge cannot simply be handed over in a shift handover.

Support should never mean replacing the relationship that already exists.

Support should mean strengthening it.

It should mean helping families carry a burden that has become too heavy, not expecting them to put it down altogether.

While my own heart has been failing, I have spent years trying to build a safe future for someone else.

Every transplant assessment.

Every cardiac procedure.

Every hospital admission.

Every new medication.

All have been accompanied by one overwhelming question:

Who will care for Francesca if I can’t?

People assume my greatest fear is dying.

It isn’t.

My greatest fear is leaving my daughter in a system that still struggles to understand just how complex her needs are.

Alongside all of this sits another grief.

Time.

Time I should have spent simply being a daughter.

Time I should have spent simply being a mum.

Instead, so much of it has been consumed by emails, meetings, phone calls and fighting systems that should have been helping us.

Those years cannot be given back.

No family should lose so much of their life simply trying to access the support they need.

I don’t want sympathy.

I want recognition.

Recognition that unpaid carers are not an endless resource.

Recognition that families should not have to choose between protecting the person they love and protecting their own health.

Recognition that surviving serious illness is only the first chapter.

The next challenge is ensuring people have the support to live those years well.

When I think about the women in my family, I don’t see a legacy of illness.

I see a legacy of resilience.

But resilience should never become an excuse for expecting families to carry what should be a shared responsibility.

Across the country there are thousands of families quietly holding together health and social care systems that would struggle without them.

We celebrate survival.

We celebrate medical breakthroughs.

We celebrate lives saved.

Now it is time to value the lives that follow.

The true measure of success is not simply whether we can save lives.

It is whether we give people—and the families who stand beside them—the support to live those lives with dignity, purpose and hope.

Because surviving was never the end of the story.

It was only the beginning.