A toddler is preparing to go home for the first time in her life after spending almost three years at Great Ormond Street Hospital.
Maisie Harris, who suffers from Ondine’s Curse which means her brain forgets to tell her to breathe, will get to sleep in her own bed thanks to a new ventilator.
The Minnie Mouse fan requires 24-hour ventilator treatment for the rare condition, which is medically know as congenital central hypoventilation syndrome (CCHS).
Maisie’s brain fails to send the correct messages telling her to breathe but she also suffers from malacia of the airways, which means they are “floppy” and do not hold their shape properly.
Now, thanks to a smaller, more portable ventilator, Maisie will be able to leave the London hospital and head home to Gillingham in Kent.
The new ventilator is intelligent enough to know when she is able to take her own breaths and when she is likely to have a CCHS episode and require ventilation.
It also comes with batteries and a carrying case so Maisie, who turns three on October 23, can go on outings with her family and, it is hoped, start school in the future.
Great Ormond Street Hospital (GOSH) staff held a going-home party on Miffy Ward yesterday to celebrate the Maisie’s bravery. She will leave the hospital with her family on Monday.
Her mother Rachel Bridger, 23, said: “We cannot wait to bring Maisie home and enjoy being a normal family. It’s felt as though we have been in hospital for a lifetime.
“Everyone here has become like a second family to us – they know Maisie inside out.
“She knows her own mind but she is a really happy little girl. She’s hardly ever upset. I don’t think it will take her long to get used to playing with her toys at home and sleeping in her own bed for the first time.
“Our friends and family have helped us decorate the house and get it ready for her. We’ve painted her bedroom cream and we have got some lovely stick-on stencils for the walls.”
Ms Bridger, who suffers from a less complex form of CCHS, and Maisie’s father Andrew Harris, 26, have been fully trained on how to use her ventilator and will be supported by a team of local carers.
The couple have mostly been living in hospital accommodation ever since Maisie was transferred to GOSH from Medway Maritime Hospital in Gillingham when she was three months old.
They have taken it in turns to make the hour-and-a-half journey back to their home.
Because of her condition Maisie, who loves playing Alphablocks on her father’s iPad, has hardly spent any time with other children.
Her parents now hope she will be able to mix with other youngsters at nursery.
Mr Harris said: “She will have to get used to lots of new faces as she only really sees close family and her nurses.
“Hopefully she will soon learn to share her toys and play with other children.”
Dr Colin Wallis, a consultant in respiratory paediatrics at GOSH, is working with a number of children requiring long-term ventilation, including Maisie, to allow them to spend more time at home with their families. He also treated Ms Bridger when she was younger.
He said: “Maisie’s situation is quite complex because she has a combination of different respiratory conditions, but we are hopeful this new technology will allow her to go home, be with her family and start enjoying a fuller, more normal life.
“We have been working on ways to allow a greater number of long-term ventilated children to go home – not only because it greatly enhances their quality of life, but also because it’s much better for their development.
“The family home is the best place for a young child to grow and develop, and Maisie will now be able to go out and about with her family, make new friends and experience everything the outside world has to offer.”
Dr Wallis said CCHS can run in families but added: “It is incredibly unusual to see two generations affected by it like this.
“Maisie’s condition is more severe than her mother’s and is also complicated by the additional problem of malacia of the airways.”