Monday, 4 February 2013

The little girl who can't CRY!: Baby is 'only child in world' with condition which leaves her unable to suck, swallow or cough


Going home: Maddison Gill, 14 months, is pictured with her parents Tamsin Whateley, 21, and Gene Gill, 23













A 14-month-old baby who cannot cry because of a baffling condition will soon be allowed home after spending her whole life until now in hospital.

Maddison Gill, of Trull, Somerset, is unable to suck, swallow, gag or cough and doctors believe that she could be the only person in the world with the bizarre complaint.
The condition means Madisson, who has spent her life at Musgrove Hospital, in Taunton, Somerset, needs to be regularly fed and given medication through a tube and has to be watched at all times.
Going home: Maddison Gill, 14 months, is pictured with her parents Tamsin Whateley, 21, and Gene Gill, 23
But now doctors are preparing to let Maddison move home after they agreed to implement a rigorous care routine from her own bedroom.
Mother Tamsin Whately, 21, said she was ‘really excited’ to know that her daughter was finally coming home and could not believe that she would be able to use the bedroom meant for her.

‘It is the weirdest feeling in the world knowing that she will be in the bedroom next door now,’ she added. 'It is nice to have her in the bedroom that was meant for her. I'm so proud of her.’
Doctors first realised something was wrong with Maddison, who was born in October 2011, when she began to gurgle instead of cry when she was born.
Maddison Gill
Maddison Gill
Leaving hospital: Doctors are preparing to let Maddison move home after they agreed to implement a rigorous care routine from her own bedroom, which has left her mother Tamsin Whately delighted
But it was only when they gave the tiny tot her first bottle and she turned blue and needed resuscitating that they grasped the seriousness of the situation.
'It is nice to have her in the bedroom that was meant for her. I'm so proud of her'
Tamsin Whately
Maddison then spent eight weeks on a neonatal unit while doctors tried to work out her bizarre condition.
Miss Whately and her partner Gene Gill, 23, were able to bring their daughter home in December 2011 but returned only two days later after she began turning grey.
They have been unable to leave the hospital ever since.
Maddison Gill
Maddison Gill
Cute: Maddison needs to be regularly fed and given medication through a tube and watched at all times
She has since undergone numerous operations, including a tracheostomy and a gastrostomy to assist her breathing and eating, but doctors are still unable to diagnose her condition.
'She looks completely normal and does copy some things like screwing up her face to smile and blowing bubbles, but she can't cry or swallow'
Tamsin Whately
Miss Whately, a former nursery nurse, said: ‘She has an undiagnosed neuromuscular condition. Essentially she doesn't have reflexes.
‘She looks completely normal and does copy some things like screwing up her face to smile and blowing bubbles, but she can't cry or swallow or anything like that.
‘When she cries she is not using the muscles to make a facial expression, she uses others, so she just sort of screws her face up and whimpers.
Maddison Gill
Maddison Gill
Mystery: Maddison has undergone numerous operations, including a tracheostomy and a gastrostomy to assist her breathing and eating, but doctors are still unable to diagnose her condition
‘In July she had a tracheostomy to help her breathe and she has picked up a lot since that operation. She has learned to roll now and she won't stop until she hits an object - she loves it.
'She has learned to roll now and she won't stop until she hits an object - she loves it'
Tamsin Whately
‘She has also learned to hold her weight and stand on her legs now too which she couldn't do before, and she does what I call commando shuffling where she uses her elbows and her knees.
‘She has surprised absolutely everybody. We have had the same developmental physiotherapist since she was born and she said to me the other day that when Maddison was born she thought she would not be able to do anything at all.’
The family will now meet with doctors at the hospital next week for a discharge meeting in a hope to bring Maddison home before the end of this month.
Maddison Gill
Maddison Gill
Mother and child: Tamsin Whately said she was 'really excited' to know that her daughter was finally coming home and could not believe that she would be able to use the bedroom meant for her
Once home Maddison will need 24-hour care and nurses will watch the tot as she sleeps to ensure nothing goes wrong.
'It is hard for us because as much as we want to we can't watch her during the day time and during the night time, we need sleep too'
Tamsin Whately
‘The care workers have said they will come in to watch her five days a week so my mum has moved in with us and has volunteered to do the other two days which is amazing’, Miss Whately added.
‘It is hard for us because as much as we want to we can't watch her during the day time and during the night time, we need sleep too.
‘We did have her home briefly for two weeks a few months back in preparation, that was an incredible feeling.
‘It was so strange getting out of bed and knowing Maddison was only next door and that we didn't need to get dressed and go out to the hospital and visit her. I can't wait until that feeling is permanent.’
Culled from dailymail.co.uk

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