Maisie goes home from hospital for first time in her life

Brave Maisie Harris has gone home for the first time in her life after spending nearly three years at Great Ormond Street Hospital (GOSH).

The toddler, who will be three on 23 October, has congenital central hypoventilation syndrome’ (CCHS) which is also known as ‘Ondine’s Curse’. This means her brain does not send the right messages telling her to breathe so she requires 24-hour ventilation.

Maisie’s condition is complicated because she also has malacia of the airways, so her airways are floppy like the top of a balloon and do not hold their shape properly.

The advent of smaller, more portable ventilators has been a major factor in allowing Maisie to leave hospital. Her 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 support.

The ventilator also comes with batteries and carry case, so Maisie will be mobile enough to go on outings with her family and hopefully even start school when she is older.

Mum 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.”

Dr Colin Wallis, a consultant in respiratory paediatrics at GOSH, is working with a number of long-term ventilated children including Maisie to allow them to spend more time at home with their families.

Dr Wallis 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.”

Rachel, and Maisie’s dad Andrew Harris, 26, have been fully trained on how to use her ventilator and they will also be supported by a team of local carers.

The couple, from Gillingham, Kent, have been more or less living in hospital accommodation ever since Maisie was transferred to GOSH from Medway Hospital when she was three months old. They have taken it in turns to make the hour and a half journey back to their home.

On the Friday before she left, staff on Miffy Ward threw a special going home party for the family.

Because of her condition Maisie, who loves Minnie Mouse and playing Alphablocks on her dad’s iPad, has hardly spent any time with other children. Rachel and Andrew hope this will change when she is able to come home and attend nursery.

Andrew 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.”

Like Maisie, mum Rachel has CCHS although her condition is less complex. Consultant Colin Wallis also treated her when she was younger.