Bruce's story – by parents, Megan and Ken

After Bruce was born, he breathed on his own for a week before things changed. We were sent to Southampton Hospital where Bruce was diagnosed with a large mediastinal mass in his chest and referred to GOSH in London, transported on a bank holiday weekend by helicopter. Bruce was diagnosed with a benign Teratoma – a rare tumour – wrapped around the vein in his neck, leading to his heart. On day #9, little Bruce had open chest surgery to remove the mass.

It was always going to be a risky procedure because the vein the mass was wrapped around led from his head to his stomach. There was a risk of stunning that nerve and causing further complications. We even had to prepare for the worst. I will never forget the sickening feeling of signing the consent form for surgery at just 2 weeks old. He needed platelets after surgery and the top part of his diaphragm was affected causing tracheobronchomalacia, diaphragmatic palsy and left vocal cord palsy – possibly compromising his ability to eat and talk.

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When you or I breathe out our lungs expand and the diaphragm goes down and compresses the nerves, but for Bruce when he breathes his diaphragm goes up and compresses his lungs which – as they try to expand and without support - collapse and close.

Bruce spent most of those early months in the hospital Paediatric Intensive Care Unit (PICU), on many different machines, having regular CPR, heavily sedated for his tiny size. The hospital tried to extubate him several times but each time Bruce would need resuscitation, by the fifth attempt, they gave him an ultrasound and found the palsy in his diaphragm.

At one month he had to have a tracheostomy (trachy) - inserted via an opening (stoma) in the front of his neck – which leads into his windpipe, allowing him to breathe, as well as removing any fluid which might congest his lungs or airway.

Bruce’s nursing team at the PICU were incredible and literally kept him alive, a trio of them have become like family. And at 7 months Bruce was moved back to the (High Dependency Unit (HDU), where he had regular CPR, slowly weaned off various medications. Again, his nursing team were fantastic, working around the clock to keep him alive.

WE THOUGHT A HOSPICE WASN’T FOR US

We were in PICU with Bruce at just 2 months when we first heard about Julia’s House Hospice and Emma and Laura came to visit us on the ward. When we heard the word hospice, we panicked and thought, no, no Bruce is not end of life, that’s not for us. That first year with Bruce was the hardest of my life. For a time, it was impossible to change his nappy where he didn’t stop breathing.

We were even trained to administer specialised equipment like the “bag valve mask” (BVM). Normally only used by intensive care staff.

Because of his condition, Bruce is entirely ventilator dependent, which means he can never be left alone. If his trachy gets blocked - if he coughs or sneezes – or knocked from his neck while he’s playing - he’s busy and inquisitive like any other toddler - the results can be fatal. Bruce can go limp and grey within a minute, so anyone with him must be fully trained to resuscitate, without delay.

That means being organised. It’s a busy household; we work shifts and full time respectively, switching his care between us. Ken comes home after a long day and takes over Bruce’s care while I head out to my police officer late shifts or night shifts. Bruce is fed, bathed and changed and has his trachy site cleaned every night with ties and dressings, before he settles, monitored through the night by a nurse.

BETTER UNDERSTANDING GAVE US CONFIDENCE

After a few meetings with the Julia’s House team, we had an altogether better understanding of what they do, saw how lovely they were and our reticence to get involved with a hospice turned to confidence. We agreed to proceed.

What we’re going through is incredibly complex and it’s hard for some to understand. People often say to me (Megan) “I don’t know how you do it” my answer is that if my little boy can go through what he has and still be smiling and happy I can do anything and be the best parent I can be to make sure he gets the best opportunities and doesn’t miss out.

When I (Ken) first went back to work on a building site after Bruce’s operation, I got all my work colleagues together in one room so I could explain it all just once. I didn’t want to keep going over and over it.

With Julia’s House we don’t have that.

Bruce is 23 months old now and developing well. The Professor at Southampton Hospital was astonished that Bruce has no neurodiversity’s and is developing as a boy of his age should. He’s bright and cheerful and on the move, towing his ventilator. Beating everything the doctors warned against. But as his parents, we must always be on high alert, watching to see if Bruce needs suction or his nebuliser.

JULIA’S HOUSE OFFERED INCREDIBLE SUPPORT

After further meetings and in-depth discussions about Bruce’s critical care needs, we could see that Julia’s House could offer incredible support. They first began visiting Bruce in April 2025. Because of his complex needs, it took a little while to put together the right tailored care package - Bruce requires three nurses with specialist training, not all in the same respite session but so they are able to rota his care accordingly.

We couldn’t believe the kindness of people. We’ve always worked full time, paid our own way and couldn’t believe there was all this support out there, for free.

Familiarity is a big thing for Bruce. Initially when he didn’t know the Julia’s House nurses, his malacia (difficulty in breathing) would trigger his breathing to stop altogether and he would go grey, floppy and need immediate resuscitation.

Whether the nurses came to our home or we took him to the hospice, we stayed nearby to start with. In the room, then in the next room, while he got used to them. Progressively staying for longer sessions, working up to two hours, then three.

BRUCE HAS GROWN STRONG BONDS

Bruce has gone from initially crying anytime the Julia’s House care team arrived to smiling and waving.

For our wellbeing as a family and as a couple, Julia’s House has been amazing. He wouldn’t eat with them the first few times. Now, he’s so much happier. He doesn’t cry anymore and was too busy playing to notice us leaving the other day! Emma, Laura, Susie, Charlotte and Yolandi have all been amazing.

He’s grown strong bonds with his care team and blows them kisses when they go. He has one or two respite sits a month – in our home – and they start playing the minute they get here, making biscuits, painting, telling stories, singing songs. The team are currently doing a risk assessment so they can take him outside, with his ventilator in tow.

And when he goes to the hospice, he loves the parachute, music sessions – the maracas are his favourite – and he adores being in the sensory room, playing with other kids and having fun.

HELPING US AS A COUPLE

I can’t stress enough how Julia’s House has helped us as a couple, enabling us to spend time together.

They’re incredible, always asking if there’s anything they can do to help. If we didn’t have that little break from our full-on new normal, we’d go mad. That few hours of respite changes our week. Three or four hours just to go to a coffee shop without worrying if the ventilator’s got enough battery.

We’ve had the opportunity to do some amazing things too. Once when Bruce was in a session, Julia’s House organised for both Ken and I to go into a separate area in the hospice and have a massage while Bruce was happily playing.

Another time we took a rib ride around the harbour which was very exciting. And Layla gets to do everyday things and not feel stressed, spending time with her other siblings doing normal activities that we couldn’t do because of Bruce’s equipment.

Julia’s House has helped us enormously, they’ve really kept us going, despite the added pressure we’re under to make this work, and we haven’t had to pay for any of it!

While Bruce is being looked after, we know he’s in good hands so we can relax and do normal things like go into town – without worrying whether Bruce needs suction or his nebuliser – go swimming or out for dinner.

Sometimes we can’t eat together, we might both be in the house, but we’re often not together because one of us is with Bruce and the other either cooking supper, tidying the house, working or helping the other kids. So, these sessions really give us a break. The chance to be together.

THE SIBLING SUPPORT MATTERS TOO

We really appreciate the sibling support too. Layla has regular visits from Maria, who takes her out for coffee and gives her the chance to chat about Layla.

She doesn’t always want to talk about life at home, she just wants to be herself.

With so much focus on Bruce, it’s nice for her to enjoy the spotlight. She was added to the young carers at school, but she doesn’t always want to talk about it, she just wants to be herself and Julia’s House gives her that.

She’s already been on a Julia’s House residential trip for a weekend where she got to do water sports and abseiling at Rockley Park, met other siblings and made friends. Messaging each other occasionally. It’s been great for her to meet other siblings who live in a similar scenario. They “get it.”

Layla has been known to ask, “is Bruce your favourite?”

The extreme nature of what the family are going through every day has an impact on his sister and brothers. Layla has been quite anxious and struggled emotionally, so the sibling support we’ve been offered has been invaluable.

We’re trying not to be 100% focused on Bruce. His needs are visible, but his brothers and sisters’ needs are emotional, so they’re harder to spot. But as Bruce gets better and more mischievous, he gets told off too, so they see he gets treated the same.

Tobi and Charlie have been offered sibling support too but given their age they felt they didn’t need sibling workers. They know the support is there if they need it or want to be involved, it’s been a big adjustment for them too.

KNOWING WHAT’S AVAILABLE IS AN AMAZING HELP

Offloading to the nursing team helps but it’s also helpful having access to family support workers who do what they can to help us access specialist equipment. For example, they helped us find the funding for a portable suction machine. This was incredible as it meant that equipment wasn’t so heavy, bulky and visible. Knowing what’s available is an amazing help!

Julia’s House helps us through everything, even things like speaking to someone about the pump. They’re almost like extended family - we hand over our most precious thing - and they send us selfies of Bruce having a lovely time with them whilst we’re gone.

IF YOU’RE LIVING IT, YOU GET IT

Julia’s House runs mums’ and dads’ events too where we can be individuals again. Things like pamper nights at the hospice. When you’re dealing with something so all-encompassing it’s nice to spend time with people who “get it” but also don’t expect you to talk about it. There’s a comfort in being surrounded by people in a similar situation.

If you’re living it, you get it.

ANTICIPATING BRUCE’S FUTURE NEEDS

As for the future, Bruce may need more surgery and maybe even a pacemaker in his diaphragm which is very rare. I’m sure Julia’s House will support us as we learn about this, helping us navigate how to manage it, just as they support us now.

Bruce's story – by parents, Megan and Ken

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