Ten-year-old Daisy is a patient at the Respiratory Sleep Unit at Great Ormond Street Hospital (GOSH). With the help of the unit, she’s now getting a good night’s sleep.
Since opening in 2009, the Respiratory Sleep Unit has become the largest paediatric sleep centre in the UK, with at least four sleep studies each night, six nights a week, amounting to around 1,200 studies a year.
Most of the sleep studies are cardio-respiratory (measuring overnight oxygen and carbon dioxide levels, plus chest movements and airflow at the nose), but a growing number include basic electroencephalogram (EEG) too.
Michael Farquhar, Sleep Fellow, says that the patients they see come with a variety of conditions: “If patients seen at GOSH have problems related to sleep-disordered breathing, we can help. We work closely with other specialties, including ear, nose and throat (ENT), craniofacial, spinal and neuromuscular.
“A large part of our caseload is due to the fact that many GOSH patients have complex needs. We can anticipate that certain patients will develop problems. Children with Duchenne Muscular Dystrophy often have increasing problems with breathing as they get older. We become involved in the routine surveillance of their sleep once they reach a certain age and support them with their breathing at night.”
Ten–year-old Daisy comes to the Respiratory Sleep Unit just twice a year, but the visits are essential for her. Following surgery for neuroblastoma, she has had a diaphragm weakness that has made her unable to breathe properly. For two years she has been on a portable bilevel ventilator (a BiPAP machine) which helps to support her breathing overnight.
Her Dad, Andy, says that in that Daisy’s quality of life has improved. “At first it felt intrusive and quite heart-wrenching to see Daisy asleep with this machine. And of course a good night kiss was out of the question. But after two weeks or so, we saw that she was sleeping better and more alert the next day.
“Daisy’s school attendance has improved and recovering from coughs and colds seems to be not as difficult as before. We’ve gone from headaches and cloudiness all day to having a clear head and being alert and alive again. Now Daisy insists that the BiPAP machine goes on.”
Daisy has decorated her machine with glittery stickers. She describes the Respiratory Sleep Unit as “soft and comfortable”. “They’re nice here and look after me really well,” she says. Andy adds: “They are a fantastic team. I’ve phoned them when the machine has bleeped or made a funny noise, they are always there to assist.”
“My Dad brings me to hospital. Today I had tea at the Ritz before coming here and another time we went on the London Eye. Dad plans the best adventures. My teddy bear Ted Ted Fred comes everywhere with me!”