A Visit That Changed Us: The Hidden Needs of Sick Children in NI

Myself and the Vice Chair of Digg Deep For Kids, Amy Smith, recently visited the charity Little Heroes, which supports the Royal Belfast Hospital For Sick Children. We spent time with staff across paediatrics, intensive care, theatres, neurophysiology, and play services. We were not sure what we were going to hear, because we found ourselves thinking surely the Royal has everything they need to look after our children. The hospital looks after sick children right across Northern Ireland, and any one of us could find ourselves needing their services for our kids.

We expected to hear about staff shortages, but what hit us straight away was the way incredible teams are constantly bridging gaps that families should never have to fall into. This is not a story about people not caring. It is the opposite. People love their jobs. They do the best with what they have. But what they have often is not enough, and many of the most important things children need are over and above what the NHS can realistically fund. This is where Little Heroes and other charitable support step in. Not to add luxury, but to add the basics that make care faster, safer, and less frightening.

Rare diseases, where speed changes a child’s future

One of the first conversations we had was with Dr Siobhán O’Sullivan, who works in paediatric metabolic and rare disease care. Metabolic diseases are conditions where the body cannot break down certain chemicals properly. Some are picked up early through the heel-prick test, but not all.

The consequences of delay are huge. Without rapid, specialist diagnosis, treatment starts later, outcomes worsen, and families live for longer in uncertainty. What is needed is not vague improvement. It is specialist testing that can happen quickly, so children can be diagnosed and treated faster.

And then there is the hidden side of rare disease care, clinical trials. Trials can be life-changing, but families often have to travel to access them and the costs are not covered by health or social services. Flights, accommodation, transport, parents leaving work to be at their child’s side. Families already living in crisis are then asked to carry the financial burden of trying to save their child. Charitable help is the reason some families can say yes to treatment at all.

The equipment that should be standard, but is not.

Across wards and services the same theme was repeated. Teams get what the hospital can afford, but not always what the work requires. Dr Jen Johnston, a paediatric consultant, described a system where donations of roughly £35,000 a year help stretch care across the board.

Some of the gaps are starkly practical. Blood-giving equipment that allows blood to flow directly and faster without manual pumping. Neonatal resuscitators, a small heated trolley bed, are available in neonatal units but not in other places in the hospital where they are needed. Ultrasound machines used for IV access in children are ageing, and newer machines would speed up access and reduce discomfort. In spaces like Dillon’s Room, staff noted that basics like a cold bed are missing.This a bed that is used when a child dies to give the parents a bit more time with them before they need to be moved to the morgue. 

None of this is about shiny upgrades. It is about giving staff tools that match the level of care they are trained to provide.

Dr Jen Johnston spoke of the need for more specialist equipment in her department.

Brain monitoring, essential care running on failing tech

We met Bronagh and Paula, clinical physiologists who use a machine that reads electrical activity in the brain with about 25 electrodes. It is vital for understanding what is happening neurologically in sick children and newborns, and it often travels to the maternity unit to support fragile babies.

Then they showed us the laptop driving it, and we were so shocked. It freezes. It is old. They are working around it daily. A replacement is estimated at £30K, an amount unreachable inside normal budgets, but critical to safe and effective neuro care.

Bronagh (Clinical Physiologist) showed us the laptop that is old and needs updated to deliver a better service and level of care for our children.

Paediatric Intensive Care Unit

The Paediatric Intensive Care Unit, PICU, is a place families never expect to enter, and nobody forgets. It has 12 beds and serves children from across the region, right up to age 16. These are the sickest children, with heart failure, lung failure, organ support, and machines keeping children alive.

Staff spoke honestly about how stressful and sometimes tragic this space can be. When bad things happen here, it happens at full volume. It changes parents forever. What they want is not only medical equipment. It is holistic support. Kits and comforts for parents, ways to de-stress it as much as possible, and practical help during long stays.

There are 12 patients, but only two parent bedrooms. Each bedroom has two beds. Some children are here for months. That means exhausted parents with nowhere private to sleep, trying to split life between a hospital and the rest of their world. Donations have helped provide meals and support, but the gap is still there.

The PICU consultants also highlighted a very specific need that shows how practical these gaps can be. They have asked for 23 humidifiers for ventilators. These prevent hypothermia, protect delicate airways, reduce bronchospasm, and keep airway secretions thinned. That is especially important in winter when respiratory illnesses surge. Some of the current humidifiers are nearly 20 years old. Each humidifier costs £2,044, putting the total need at £47,012.

PICU also trains junior doctors and needs equipment for teaching and diagnostics, including machines that automate blood tests and enough respiratory support devices like AirVos, around £8,000 each, so portable care is possible. Again, this is where charitable support can help.

The Paediatric Intensive Care Unit are amazing and are working so hard with the resources they have - but they need more equipment.

Theatres, life-saving tools that should not be borrowed.

The Royal Belfast Hospital for Sick Children has three theatres running flat-out Monday to Friday, with emergencies even on weekends. They cover everything from general surgery to day-care dental, and require fast access to imaging like CT and MRI.

Here is some of what the staff flagged. A rapid blood infuser, £25,000, is needed so blood can be delivered quickly in critical situations. Without one, staff are squeezing bags by hand or running to A&E to borrow equipment. Gastroscopes, £30,000 each, are not available in sufficient numbers. Airway and incubating equipment for children are essential and still too scarce.

The takeaway from theatres was simple. When equipment is available, children are diagnosed faster, treated faster, and recover faster.

Play specialists, protecting childhood inside illness

One of the most moving parts of the visit was meeting Jacklyn Jamison and hearing about the play specialist team, 22 members of staff working to make hospital stays less frightening and more human. They do play, therapeutic preparation for procedures, and ongoing support for children who may return again and again.

In a hospital seeing more children with additional needs, sensory support is not optional. It is part of safe care. They need more mobile sensory equipment.

These resources are not funded by the hospital. Many are disposable. It takes huge, steady spending to keep the cupboard stocked. Charitable funding covers portable sensory equipment, multisensory lights, vibrating snakes for calming therapy, nearly £7k a year in craft supplies, comfort toys like Squishmallows, and a visitor programme funded by Little Heroes, including balloon modelling, dance and movement, and joy brought directly to bedsides.

When you walk through the wards you can feel it. These are not toys. They are tools for resilience.

Jacklyn Jamison - Member of the play specialist team does such important work.

What stayed with us.

Everywhere we went, staff spoke with pride and love for their work. But they also spoke plainly about what is missing. Not extravagance. Not nice extras. Just the pieces that complete the care. Faster diagnosis for rare diseases. Reliable machines that do not freeze mid-test. Resuscitators where they are needed. Enough beds for parents to sleep near their child. Tools in theatre that save minutes, and minutes save lives. Play and sensory support that protects a child’s mind while their body heals.

The NHS provides the backbone. Donations provide the part that makes the system work for real families, in real life. If you ever wonder whether charitable giving makes a difference in hospitals, I can say without hesitation that it does. I have just seen where, how, and who it holds up.

Why I am sharing this, and what we hope for next.

I hope that this year Digg Deep For Kids can help Little Heroes to help the Royal Belfast Hospital For Sick Children. How can we live our lives and not try to help them? Can we buy some of those machines they need? Can we buy a cold bed for Dillon’s Room to help families with the most difficult thing that could ever happen to them, saying goodbye to their child. Can we provide support with sensory toys?

We have received a spreadsheet with a list of equipment, and as soon as funds are in from this year’s Digg Deep campaign, we will start allocating against the list.

How you can help

If you would like to pledge your support to a piece of equipment, you can donate online at www.diggdeepforkids.com, or you can buy a raffle ticket to be in with a chance of winning a motorhome, £50k, or over 20 luxury prizes.

If you are a business and you would like to put your business name on one of the pieces of equipment that is going to save children’s lives, please reach out to me on info@diggdeepforkids.com.

As I sign off this article on behalf of the whole board at Digg Deep For Kids, all I know for sure is this. We are going to try our best to help as much as we can.

Caroline O’Neill 

Digg Deep For Kids Founder and Chair Person