Six-year-old Kian is back home in plenty of time for Christmas

As well as treating his illness, CUH was there every step of the way to help this boy return to normal life with his family

Mon, 07 Dec, 2020 - 07:00

Colette Sheridan

After spending a staggering 750 days in hospital, six-year-old Kian Barnes-Aabo recently came home from Cork University Hospital (CUH), still in need of a ventilator to breathe at night, but hugely improved. His mother, Sarah, said the family is "absolutely delighted".

"And I can't describe how thrilled Kian is. It has been such a long time," she says. It is, she says, difficult for a small child "to keep the faith that they will get home".

"Kian has shown incredible resilience over the last two years. He just wanted to get back to his toys and his big sister [Sophie]." Life in Crumlin Hospital in Dublin and the past four months in the children's unit at CUH was made as comfortable as possible with school lessons provided, as well as therapies such as occupational therapy.

Last year a very special young lady named Sophie stole our hearts on the #LateLateToyShow ❤🎁

Sophie's segment got pretty emotional once the conversation moved from toys to Sophie's little brother, Kian, who was being treated for leukemia in CHI at Crumlin at the time (1/5) pic.twitter.com/F1XhFMqHJq
— Ronald McDonald Hse (@RMHC_Ireland) November 27, 2020

At two and a half years, Kian was diagnosed with leukaemia and first attended the Mercy Hospital in Cork. He was in the care of Crumlin Hospital also. He had three and a half years of chemotherapy. While on maintenance chemotherapy, he was struck down with a virus. Because he was immuno-suppressed due to the chemotherapy, his immune system attacked itself and he became paralysed from the neck down and couldn't breathe. He had to have a tracheostomy, a procedure that creates an opening in the neck in order to place a ventilator in the windpipe. He is still using a wheelchair but his mobility is improving.

"It was a very difficult time. In Crumlin, Kian was between the intensive care unit [ICU] and the transitionary care unit [having been in the leukaemia unit there]."

Prof Deirdre Murray was instrumental in making tracheostomy care available for children at Cork University Hospital. Picture: Darragh Kane

In July of this year, Kian was deemed well enough to move from Dublin to the Puffin ward at CUH, under the care of consultant paediatrician and associate professor in the department of paediatrics and child health at UCC, Deirdre Murray.

"We owe such a lot to Professor Murray," says Sarah. "When Kian moved from Crumlin four months ago, he was doing very well but was almost fully ventilator-dependent which meant he couldn't breathe on his own. He was constantly attached to his ventilator. Prof Murray was tireless in her efforts to help him get to the next stage, wean him from the ventilator, and establish more time breathing independently, especially by day so Kian could enjoy the typical activities of any six-year-old."

Sarah says that because Kian is making a neuromuscular recovery from two years of full paralysis, Prof Murray's job is "complex".

"However, she encouraged and challenged him to reach his potential. Now, in four short months, Kian can sustain almost a full day breathing on his own. It was always our hope, but never our expectation. This is a whole new lease of life for Kian [who is clear of leukaemia] and we are thrilled."

However, Covid-19 is an added worry for medical staff and Kian's parents "as our child needs a ventilator and is immuno-suppressed".

How has Kian's lengthy stay in hospital affected him? "It's very difficult to assess that. Kian is a very good boy. Children are very resilient. We adapted as a family and Kian adapted to the hospital environment as much as he could. He had school, physiotherapy, music therapy, language therapy, occupational therapy, and play. That was all to boost his development, communication, and interaction because it's very difficult to be isolated from other children. But when you're immunosuppressed, you have to be."

Sarah says that until Kian is reassessed at the end of next year, he will need ventilation at night time.

"The ventilation takes a lot of care. There's a lot of equipment and it's quite medicalised. CUH and Crumlin have specialised staff who train parents to use it."

Sarah and her husband, Charlie, received their training at Crumlin.

"There was a lot of training carried out by the ear, nose and throat team. Basically, you're managing a child's airway. Children with a tracheostomy can't clear their own throats so you have to always keep your eye on your child."

Kian Barnes-Aabo finally leaving CUH with his parents Charlie and Sarah. The six-year-old received schooling and a range of therapies at the hospital to minimise the disruption to his development.

Travelling up and down to Dublin, with one parent always at Crumlin, involved a lot of juggling. Sarah says they couldn't have done it without Ronald McDonald House and other children's charities.

Charlie works at a large IT multinational. Sarah is a third-level teacher. She taught English literature and English language at a university in Spain when the couple lived there. Sarah is staying at home with Kian and there will be some medical support as well. A tutor provided by the Department of Education will teach Kian at home.

"The care that CUH provide in a regional centre is absolutely vital for children like Kian.

" Everyone automatically thinks of Dublin for this kind of care, but it's testament to Prof Murray and other consultants such as Dr David Mullane that children like Kian can be cared for in Cork."

Prof Murray was instrumental in making available tracheostomy care for children at CUH. When she started working at the Cork hospital in late 2008, "they didn't have a service for tracheostomies for children which meant they were on waiting lists for Dublin".

"We decided to try to take care of these children locally," she says.

In 2009, tracheostomies for children became available at CUH.

"Usually, when children with breathing difficulties come to us initially, they need support during the day and night. As they improve, they might be able to come off the ventilator for a few hours in the day. The process of coming off the ventilator can take years in some cases."

Prof Murray says there is a lot of work and care required from parents looking after sick children at home.

"It's very stressful for the parents. They're basically learning how to provide intensive care in the home.

"And the other thing is that family life can be disrupted with nursing staff coming to the house."

The HSE has reduced the night time hours of nurses in the home. Now, a nurse comes in at 11pm and leaves again at 7am. "At 11pm, it's often the only time a parent can have a shower or a cup of tea. They might sleep for six hours and then they're up again at seven o'clock. We try to get some help for the parents during the day. It's all a huge undertaking for parents but I think it's worth it for the parents to get their child home. The big thing I see is how much the children improve and develop once they get home. They're with their siblings. They start to develop their personalities. It's hugely rewarding to see that."

Sarah and Charlie are adapting their home for Kian. They have installed a wet room downstairs which he'll be able to shower in using his wheelchair. While in CUH, Kian was managing to walk along a corridor.

"Everything is improving," says Sarah.

"He has some way to go of course. But kids have the ability to bounce back as much as possible.

"Kian loves physiotherapy and occupational therapy. The therapists in CUH and at Crumlin are fantastic. They're really good at working with children and motivating them. That's really important for longer-term patients. Kian was cared for by an exceptional team of nurses in the Puffin Ward in CUH. They are a fantastic team and provide care for general and complex paediatric patients here in Cork."

Kian has had a long journey in his short life. He deserves every happiness.