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Posted: 05-10-2013 13:43 Post subject:

Maisie Harris to leave Great Ormond Street for first time

A two-year-old girl born with a condition which means her brain forgets to tell her to breathe is about to leave hospital for the first time.
Maisie Harris from Gillingham, Kent has been at Great Ormond Street Hospital in London since being transferred from Medway Maritime at three months old.
She has congenital central hypoventilation syndrome (CCHS), also known as Ondine's Curse.

A new, portable ventilator has enabled Maisie to go home.
The machine knows when she is able to take her own breaths and when she is likely to have a CCHS episode and require support.
It has batteries and a carry case, so Maisie, who is three on 23 October, will be able to go on outings with her family and go to school when she is older.

Staff on Great Ormond Street's Miffy Ward held a party for her on Friday, before she leaves hospital on Monday.
"We cannot wait to bring Maisie home and enjoy being a normal family," said her mother Rachel Bridger, 23.
"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."

Maisie, who featured in BBC2's Great Ormond Street series last year, also has malacia of the airways, so her airways are floppy like the top of a balloon and do not hold their shape properly.

Consultant Colin Wallis said: "We have been working on ways to allow a greater number of long-term ventilated children to go home.
"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 treated Ms Bridger when she was younger. She also has CCHS, although her condition is less complex.
She and Maisie's father Andrew Harris, 26, have been trained on how to use her ventilator and will be supported by a team of local carers.

http://www.bbc.co.uk/news/uk-england-24400785

Posted: 05-10-2013 15:59 Post subject:

I found the alternative / popular label "Ondine's Curse" intriguing. Here's Wiktionary's explanation for its origin:

Posted: 06-10-2013 00:16 Post subject:

This is interesting, as I've long suspected (remember: not a doctor) something similar as the cause of many SIDS (and possibly SADS) deaths.

I'm sure someone's looked into this possibility, and it would be interesting to see any actual research on it. Might go trolling through ScienceDirect later.