Home sweet home for Somerset girl who can’t cry
The mother of a 14-month-old baby who cannot cry because of a “baffling” condition spoke of her joy yesterday after her daughter was finally allowed home.
Maddison Gill is unable to suck, swallow, gag or cough and doctors believe that she may be the only person in the world with the strange complaint.
Her condition means that she needs to be regularly fed and given medication through a tube and has to be watched at all times, especially at night.
But now, after spending her whole life in hospital, doctors are preparing to let Maddison move back to the family home in Trull, Somerset, after they agreed to implement a rigorous care routine from the comfort of her own bedroom.
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Mum Tamsin Whately, 21, said she was excited that her daughter was finally coming home and could not believe that she would be able to use the bedroom meant for her.
She said: “It is really exciting to know she is coming home, it is the weirdest feeling in the world knowing that she will be in the bedroom next door know. I’m just so excited.
“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. 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.
Maddison then spent eight weeks on the neonatal unit at Musgrove Hospital, in Taunton, Somerset, while doctors tried to work out her condition.
Tamsin and 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.
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.
Tamsin, 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.”
Once home Maddison will need 24-hour care and nurses will watch the tot as she sleeps to ensure nothing goes wrong.
“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,” Tamsin added.
“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.”