The family room on the neonatal unit at the RVI has a kettle, some chairs and if you're lucky, a few biscuits. Parents sit there for a break between the beeping monitors and the incubators. Andrew Dunsmure spent a lot of time in that unit. And he noticed something. It was nearly always mothers. The dads were outside. Or they'd left the hospital altogether. Or they were doing what Andrew did for the first two years of his son's life: trying to hold everything and everyone together, asking nothing for himself, and quietly falling apart.

Today, Andrew is the chair of the Board of Trustees at Tiny Lives Trust, a charity that supports premature and sick babies and their families across the North East. He is also the father of Aiden, a little boy born at 28 weeks who lives with 22q deletion syndrome, a rare genetic condition affecting physical development, cognition, and mental health.

Andrew came on This Is The North recently to talk about what it costs fathers when the system treats them as bystanders in their own child's crisis.

A Survival Event

Andrew's son arrived twelve weeks early, during COVID. His wife's scream sent him running upstairs. Hours later, he was in scrubs at the RVI being asked to name his son. Aiden was weighed in front of him in a clear plastic bag with a little knitted hat on, then whisked away.

Then came the consultant. "We'll know if it's a survival event within the next few hours." Andrew absorbed that language the way you might absorb directions to a car park. He waited. When they left the operating theatre, he paused and thanked the whole team, as though they'd just wrapped up a pleasant meeting.

Over the months that followed, he told the unit psychologist he was fine. Going to the gym, getting on with things. Absolutely fine.

What he was doing had a clinical name: dissociation. He just didn't know it yet.

Purpose Disguised As Coping

Aiden survived. But good news never arrived clean. He survived, then they found a bleed on the brain. He could breathe on his own, then they discovered holes in his heart. Andrew's wife, Angela, was dealing with severe trauma. She couldn't function. She didn't want to be around Aiden.

Andrew became father, mother, and carer for his wife. He couldn't hold his son without asking, because physical contact was timed and limited to protect a premature baby's developing system. So he found other ways to be a dad. The adrenaline of having something vulnerable depending on him completely became its own kind of fuel. Purpose disguised as coping.

That fuel lasted nearly two years. 

Then it ran out.

The Floor of the Bedroom

Angela had pushed for genetic testing from the beginning. Andrew was more sceptical. Premature babies catch up, he'd been told. Give it eighteen months. But Angela knew. She kept pushing.

The results came back when Aiden was about a year old, after discharge. 22q deletion syndrome: a missing fragment of the 22nd chromosome with consequences across physical health, cognition, and anxiety, and a significant risk of severe mental health conditions, including schizophrenia, in young adulthood.

Andrew was at work running a team meeting when Angela called with the news. He said he'd finish up and come home to discuss it. Then he sat down and thought: what the hell am I doing?

He told his boss he needed to stop. That night, alone with Aiden, exhausted and sleepless, he lost it. "It wasn't anger. I had never experienced myself like that before. It was just raw trauma coming out. I trashed our bedroom." Angela came home to a hundred missed calls and found him on the floor, sobbing.

Two years of silence ended on a bedroom floor.

Twenty-Five Years of Not Saying a Word

Andrew's breakdown is not unusual. What is unusual is that he talks about it. 

At a recent Tiny Lives event, a man mentioned, almost in passing, that his daughter had been on the ward. She's 25 now. It was the first time he had ever spoken about it. A quarter of a century carrying something that could have been shared in a room with a kettle and some chairs, if anyone had thought to make space for him.

The system positions fathers as supporters, not patients. Postnatal depression affects approximately 8 to 10 per cent of new fathers, a figure most people would not believe because we barely talk about it. Fathers are expected to be the ones who don't fall apart. And the consequence of that expectation is men sobbing in bedrooms years after the crisis has passed, or staying silent for the rest of their lives.

Andrew used to think strength meant keeping going, powering through. Now he defines it differently. "I think of strength as almost like an honesty, authenticity, like a realism. Being open about these things."

I recognise something of that instinct in my own family. My grandson has autism, and I've caught myself sugarcoating his reality because other people's discomfort felt like something I should manage on top of everything else.

Andrew told me about a friend who got back in touch after a long absence, looked at his situation, and said two words: 

"It's shit." 

No silver lining, no bright side. Just the truth. 

We are so afraid of sitting with someone else's pain that we smooth it over. And in doing so, we leave them more alone than if we'd said nothing.

Millimetres, Not Milestones

Aiden is learning to walk again after surgery on his foot. One step is cause for celebration. The family has learned to measure progress on a different scale. They don't celebrate the conventional milestones, Andrew said. They celebrate the millimetres along the way. A sound that becomes a word. A word that becomes a sentence. Each one earned.

Andrew is clear-eyed about what lies ahead. The sky is not the limit for his son, and pretending otherwise helps no one. What he will do is give his boy every support to reach his own best possible self, while refusing to pretend the limitations don't exist. Because doing so makes it harder to put in the adjustments that actually help.

This is where the toxic positivity that surrounds disability does real damage. 

If you refuse to recognise a child's challenges, you cannot meet the child where they are. The cheerfulness that makes the observer feel comfortable actively undermines the support the child needs.

A Cloth Against the Skin

Andrew joined Tiny Lives Trust as a trustee because the charity was there when his family had nothing else. He became chair because he could see the gap between what families need on a neonatal unit and what the system provides, and he knew that gap could be closed.

On the unit, Tiny Lives runs psychological support, physiotherapy, parent groups, and a dads' peer support group led by fathers who've been through neonatal care themselves. One of their simplest interventions is among the most effective: a small cloth called the mini boo, placed on the baby and then worn by the mother, so each carries the other's scent. It calms the baby's nervous system and supports their development. The need for this work is not small. 

A 2020 RCPCH workforce snapshot found that only one in five neonatal intensive care units and one in ten local neonatal units in England had a psychologist available to families during the week. At weekends, the figure was zero. Bliss reported in 2025 that the shortfall between recommended and actual staffing for psychological professionals on neonatal units stands at 67 per cent nationally. The charity fills a gap the NHS has not resourced.

Andrew wants to extend that provision beyond the RVI, particularly for families transferred to other hospitals across the network. The Northern Neonatal Network covers ten units spread across a region stretching from the Scottish borders to North Yorkshire, serving over three million people. When a baby is moved from Newcastle to Cumbria, a family can be looking at a round trip of three hours or more. The clinical reason for transfer is usually positive, meaning the baby is less sick, but the support vanishes overnight. Andrew also wants to reach non-English-speaking communities whose needs are not yet being met.

The barriers are specific. NHS Trusts control patient data, and without access to it Tiny Lives cannot identify which families are falling through gaps or where provision is weakest. In 2021-22, NHS England ring-fenced a minimum of £90,000 per local maternity and neonatal system to co-produce equity and equality action plans with families and voluntary organisations. That ring-fence has since been removed, leaving Integrated Care Boards to prioritise as they see fit. Some do. Some don't. And coordinating a charity's services across a regional health network where each Trust sets its own priorities takes institutional cooperation that is slow to build and easy to lose. The model works where it exists. Whether the system will let it grow is another question.

The Weight We Don't Ask About

Andrew estimates that around half to two-thirds of charities have at least one trustee vacancy. Tiny Lives asks for roughly twenty hours a year. That is less time than most of us spend scrolling in a fortnight. If you have professional skills and a cause that matters to you, the distance between wanting to help and actually helping is far shorter than you think. But what I keep coming back to is that man at the event. Twenty-five years. His daughter is grown. He has carried that weight, in silence, for her entire life. When did we decide that not asking was the same as kindness?

Until next time, 

Alison