"The worst thing we’d ever had to go through": Hugo's story

Hugo was a happy and healthy baby when, just before he turned six months old, he contracted a routine childhood illness. When the illness persisted, mum Katie and dad Marcus took him back and forth to the GP and on one occasion, their local hospital in mid-Devon, but were repeatedly told it was nothing to worry about. Eventually, Hugo had an episode of acute bleeding, which led to him being blue-lighted to Royal Devon and Exeter Hospital and later transferred to Bristol Royal Hospital for Children. It was there that he’d stay for the next three weeks, while his parents were accommodated and supported at the nearby Ronald McDonald House Bristol.

Guest blogger: dad, Marcus

My wife Katie and I had been getting increasingly concerned about our youngest son Hugo. It had started in February with him being a bit under the weather, but it was an illness that he just couldn’t seem to shake off. We were told by doctors that it was just a ‘routine virus’, which was causing him to sleep very badly and lose his appetite. The latter was highly unusual! He was a healthy and robust baby, who’d never given us any cause for concern up until that point. But, having had several trips to the GP surgery and our local hospital, we were reassured that it would pass. Then, when Katie was breastfeeding Hugo one day, to her horror, he began to bleed profusely from his mouth and was coughing up blood. She called for an ambulance and sent me a message asking me to come home from work immediately. Hugo was rushed to Royal Devon and Exeter Hospital.

We spent three days in Exeter, during which time Hugo had two blood transfusions and was put on high-dose antibiotics. He’d been left anaemic because of the amount of blood he’d lost at such a young age. Katie and I stayed in the ward next to him, as doctors tried to ascertain what was making him so sick. I was changing Hugo’s nappy at 4am one day, when he had a second episode of acute bleeding. After that, Hugo was transferred by Wales and West Acute Transport for Children Service (WATCh) to Bristol Royal Hospital for Children, as his condition was deemed critical, and he needed specialist care.

In Bristol, Hugo’s medical team did a scan and a camera test under general anaesthetic (GA). The results baffled the specialists, who couldn’t see anything wrong. Then, an MRI scan revealed the root cause of Hugo’s bleeding episodes; an abscess in his throat, which had ruptured and likely taken out a vessel. Once they knew what they were dealing with, the doctors operated to ‘open up’ and drain the abscess. They also tested and discovered it was, indeed, a routine virus that had caused the abscess but this symptom of it was very rare. Hugo was kept under sedation for a week, as further tests were carried out. He was fully intubated and given intravenous antibiotics. When he was rescanned, the results showed the antibiotics were working and doctors saw enough of a change to wake him up.

During Hugo’s admission to the paediatric intensive care unit (PICU) in Bristol, Katie and I were lucky enough to be given a room at the nearby Ronald McDonald House. It was incredibly beneficial to have somewhere warm, safe, and comfortable to stay, just a stone’s throw away from our baby boy. Financially, it saved us hundreds of pounds in hotel bills and fuel costs, especially given that we live a 75-mile drive away from the hospital.

But staying at the House was about so much more than just convenience and saving money. It eliminated the worries we had about where we’d stay and how we’d go about doing ‘normal’ things like cooking and washing our clothes. The amazing facilities, which included a communal kitchen and laundry room, meant we didn’t even have to think about it. Afterwards, we realised just how important those everyday things were to us. Crucially, the House allowed me to be there for my family. It is an incredibly generous and important facility and one that we would’ve been lost without.

We had family visit us at the House as day visitors, and they were welcomed with open arms, just as we had been. Everyone was so friendly and helpful, and I can’t say enough amazing things about them. The House also enabled us to meet other families going through similarly traumatic experiences, some of them far worse than our own. Although it was the worst thing we’d ever had to go through, we soon realised that our own position was relatively fortunate. We took comfort in talking to others. We found that unless you’d gone through the pain and distress of having a sick child in hospital yourself, it was almost impossible to understand.

Thankfully, Hugo’s condition gradually improved and once he was weaned off some strong medication, he was well enough to be discharged. Our stay at the House was three weeks in total but our relationship with it continues, several months after we said ‘goodbye’. We’ve stayed in touch with one family we got to know well and are planning a dog walk with them soon. We recently went back to visit the House with a tray of cakes for the staff; a small token of our appreciation for everything they did for us. They were pleased to see us again and were blown away by how well Hugo was looking.

We were lucky to have grandparents look after our older son Monty while Hugo was in hospital, as it meant we were able to shelter him from the trauma we were going through. But we fully appreciate how much Ronald McDonald Houses do for the siblings of sick children and how they allow families to stay together.

We are now six months on from Hugo’s hospital admission and we are so delighted with how well he is doing. Last month we celebrated his first birthday, which was a really special occasion. He has been truly fantastic and looking at him now, with his huge appetite and hitting all his milestones, it’s hard to believe what he went through just a few months ago.

Although our experience was incredibly tough, there are some positive elements to have come out of it. We certainly believe that we wouldn’t have coped so well, had it not been for the amazing support we received from Ronald McDonald House Charities UK and that’s something we’ll be forever grateful for.