Max and Parker

Getting home safely and the benefits of shared experience

Katherine and Max with Parker and Siobhan

Five-year-olds Max and Parker are the best of pals. They love superheroes. They adore playing at the beach. And they both have the same scars, in the same place. They are, by all accounts, ‘trachy twins’.

Their mums, Katherine and Siobhan, were introduced to each other at Addenbrooke’s Hospital. They discovered they lived just a few miles apart near Frinton-on-Sea in Essex. Both had spent days, even weeks, away from home, while their boys had specialist treatment in Cambridge.

“It was a bit strange meeting someone who actually understood. I ended up texting Kat and asking random stuff, like is this normal, is that normal? Kat had already done almost a year of experiencing everything that was brand new to me. I asked her everything.”
Siobhan, Parker's mum

Two mums and their very young children. The mum on the left has on a light blue vest top and dark glasses. She is doing a big smile for the camera. The little boy in the middle has fair brown hair and a black sleeveless t shirt. The other little boy is sitting on his mum's lap. He is wearing a green and white striped t shirt and has a tracheostomy tube. His mum has dark glasses on. It looks like they are at the beach

Two young boys playing in a family living room. There is a fireplace with a guard around it behind them and a seagrass rug. The little boy on the left has on a mustard yellow jumper and has a tracheostomy tube. He is holding a plastic toy phone. The other little boy is looking at a toy on his lap and is wearing a red jumper. Both boys have fair brownish hair.

A very young boy in a play walker, with brightly coloured seat and a tray in front with toys on. Another little boy is standing in front of the tray. He is wearing a red and black checked shirt and black jeans. The boys are interacting with each other

Going home from hospital, knowing that they had each other's support, made things a lot easier for Katherine and Siobhan.

Siobhan and Katherine went to baby groups together and could do their boys' essential medical procedures without feeling different

Max's mum was able to share her experiences which helped reduce Siobhan's anxiety about Parker's treatment and progress

Specialist care

Max was born with paralysed vocal cords and required a tracheostomy soon after he was born. At 14 months he had reconstructive surgery. Parker, who is a few months younger, was born with a narrow airway that hadn’t developed correctly. Both boys went through numerous invasive procedures. Their parents had to learn how to manage their needs at home, with specially trained nurses helping with this transition.

“The nurses gave us great reassurance and support and, because we knew them so well, we trusted their judgement. I knew that help would be just a phone call or email away."
Katherine, Max's mum

Katherine says they were lucky, only needing one emergency phone call when Max’s tracheostomy tube came out the day they were discharged!

Sarah O'Driscoll is the Family Liaison Nurse in PICU (Paediatric Intensive Care Unit) at Addenbrooke's Hospital. She is part of a wider team working together to facilitate families going home, describing it as a privilege to see very sick children improve and parents then able to take them home.

She explains: "As a team, working in partnership with families, we encourage and support the parents straight away to be involved in their child's care while they are in hospital. Parents of a child with a tracheostomy and complex needs are supported to gain the skills and confidence required to look after their child safely at home."

"The parents know their child best and need to have control back. Through effective communication, training and education we empower parents in preparation for discharge."

Closer to home

As a ‘hospital without walls’, Cambridge Children’s Hospital will endeavour to treat children in their own communities, where appropriate. This may be through telehealth technology and working closely with local clinical services as well as the families themselves.

Mostly Katherine says she prefers face-to-face appointments, particularly if there are significant concerns about Max’s health. Being in the room with their trusted consultant also puts Max at ease.

However, Katherine says having the option of hospital or home is a good thing: “Just for a simple check up, we have had phone calls which is obviously better than an hour and a half drive. I think it depends on the level of need for the appointment."

"If technology could be used to reduce impact on families, so they could have more care at home, if they prefer, that could be a really good thing.”

There is also benefit in meeting others who share your experience. Both boys still had their tracheostomy tubes in when their mums first met for coffee in a local café. They also went to baby groups together. Sometimes people would stare, particularly when the boys’ tubes were being suctioned. Siobhan and Katherine say it would have been much harder without each other.

Katherine said: “I knew what Siobhan was going through. The memories flooded back. Learning how to take care of the tube and the child. I’d already done loads of worrying, so I was able to reassure Siobhan. We have supported each other.”

Cambridge Children’s Hospital will have indoor and outdoor spaces where families can meet, something Katherine and Siobhan believe will be beneficial. “It’ll be good to have a proper parents room, somewhere nice to meet. It’ll also be great to get outside in the fresh air when you need a minute.”

A concept design of what one of the outside spaces at Cambridge Children's Hospital could look like

A concept design of what one of the outside spaces at Cambridge Children's Hospital could look like

Siobhan says her friendship with Katherine has made hard times easier.

“When you’re in hospital, you only hear hospital terminology and that can sound really, really scary. When I met Kat, I was like – it’s going to be alright.”

Two little boys in matching animal print dungarees. One boy has black rimmed glasses and is looking at a toy in his hand. The other boy is looking at the camera and handing a green toy to the photographer. They are standing against a pale grey wall and standing on wooden floor boards

An English beach scene with two little boys playing on the sand. One boy is wearing black trunks and goggles. He is pulling another boy along on a body board. The other little boy has on a blue sunhat and an all in one navy swimsuit. It is a very sunny day and the sea has gentle waves, with people swimming

Two young boys standing together. The boy on the left has on a navy shirt and trousers and white trainers. He has blond hair and a side parting. He is smiling. the other boy has on a ninja fancy dress outfit. He has black rimmed glasses.

Thank you Katherine and Siobhan for sharing your story

Two women sitting at a table in a venue with Christmas decorations. There are glittery bows on each side and a lit up christmas tree behind them. Katherine, on the left, has long dark hair and a purple jumper. Siobhan, on the right, has on a black and white stripy jumper. She has blond hair and sunglasses on her head

Katherine and Siobhan are both members of Cambridge Children's Network. If you'd like to get involved in the project, we would love to hear from you.

Join Cambridge Children's Network