‘The minute the Bumbleance came we felt like we were entering into this big family’

Caring for a child with complex needs is challenging for parents, which is why the Bumbleance service is such a life-saver

Wed, 03 Apr, 2024 - 01:00

Sarah Horgan

For every new parent, bringing their newborn home from hospital is a special, milestone moment.

Kerry couple Michelle and Joe Duggan had to wait 13 months after their son Jack was born to get their Christmas wish and bring him home to Tralee. And on the day, December 23, 2022, the Bumbleance, the national children’s ambulance service, was on hand to help.

Jack had spent his whole life up to that point in various hospitals after he was born with severely complex needs. Michelle says the medical equipment they brought home from University Hospital Kerry would have required the equivalent of three cars to transport.

“The minute the Bumbleance came to pick us up we felt like we were entering into this big family,” Michelle said. “It might sound like a cliché but, like all dads, Joe really wanted to be carrying his baby out of hospital in one of those travel car seats. After 13 months, he got his photograph and we were able to enjoy the trip home with Jack. To have the Bumbleance take us home just before Christmas was really special.”

Michelle says the amount of medical equipment required for Jack can be overwhelming.

“I’ll never forget the first time the Bumbleance took us home. The hospital gave us oxygen, suction machines, feeding pumps and all the containers for the feeds.... just an amount of stuff there that wouldn’t have fitted in a car.”

Michelle recalls how the Christmas trip home was one they feared might never be possible.

“When Jack was five months, he got pulmonary stenosis in the heart and had to have surgery,” she explained.

“Seeing them all working on him at his bedside to bring him back after he suffered a cardiac arrest was horrific. He was transferred to the paediatric intensive care unit. Then, three days later he went into cardiac arrest again. They told us that a third one might take him. We weren’t sure if Jack was going to live at that stage so we organised to have him baptised. I can remember going out to the shop to buy a shawl and candle. Neither of us could even talk to each other because we were so overcome with heartbreak. It was just us, Jack, the chaplain, at the baptism which made it really intimate and lovely.”

In his short life, Jack has endured two cardiac arrests, seven surgeries, countless blood transfusions and sepsis. He requires 24/7 oxygen due to a chronic lung disease and has a PEJ, which is a special tube inserted through the skin that allows food and water bypass the stomach.

He is one of hundreds of children availing of the Bumbleance on a regular basis. For these extremely ill children, the Bumbleance provides a comfortable and safe way to travel to and from hospital. For anxious parents, it removes the stress of car journeys and cuts down on fuel and parking costs. Caring for children with complex needs also brings with extra financial pressures for children. When Jack was just two months old and undergoing treatment in Dublin, the hotel bill alone set the Duggans back €3,500.

Michelle Duggan and Jack outside the Bumbulance. Picture: Domnick Walsh/Eye Focus

Michelle explains that while free accommodation such as the Ronald McDonald House, which provides accommodation for the families of children in hospital, are valuable facilities they are not always accessible at very short notice.

Last year the Bumbleance made 1,974 trips to hospitals from parts of Munster.

The charity has been a source of comfort for Michelle and her family from the beginning.

“This is so badly needed because it takes all the stress out of travelling. It’s much easier and such a comfort for Jack because we’re safe. The car seat puts pressure on his feeding tube but, in the Bumbleance, Jack is lying down. Because of the vesicostomy, Jack’s nappies need to be changed more regularly to avoid infection.

The fact that I am right next to Jack and have access to him if he needs me, means we are both much happier. He can watch movies on the television in the Bumbleance and enjoy a more playful and enjoyable journey. On the motorway we’ll often need to pull in if he gets sick so the Bumbleance alleviates this worry too. We can also travel as a family.

“I haven’t been able to work since having Jack as his needs are so complex. This means there is only one wage coming into the house so it can be hard for Joe to take time off work. However, if needs be, I can also ask my mum or sister to come with me.”

She praised the drivers for their dedication to the service.

“They are a huge part of our lives. The drivers are always very comforting, kind and caring. There are times where I might not have slept the night before and am worried that I haven’t packed everything. They are always very reassuring and helpful and quick to double check everything.”

Michelle and her family have no idea what the future holds. Nonetheless, it is reassuring for them to know the Bumbleance will always be on standby.

“We know Jack has a rare syndrome but at the minute it is undiagnosed. We have been to see a geneticist but everything Jack has been tested for has come back negative. The geneticist said they will keep testing until we eventually find out what the name of the syndrome is. Whatever it is won’t change Jack or how we feel about him but it might give us a window into the future.”

Bumbleance chief executive Brian Conlon said there is significant demand for the service.

“We would always have about 200 families on the books. That seems to be the way. Most of them would be regulars and about 60% of them would be undergoing chemotherapy. The hope is always that they will have the chance to ring the bell in Crumlin to mark the end of their cancer treatment. Sometimes the children ask the drivers to come in and ring the bell with them.

The drivers are brilliant. They are the life and soul of the charity. They form such a bond with the families but the children in particular.

"All the drivers all very experienced and have come from the ambulance service and fire brigade. They are always calm and never panic but most importantly the children love them.

“The feedback we get is that there are children sitting by their window waiting for the Bumbleance to arrive.”