Rare condition, 14-mth-old US baby girl Maddison Gill can’t cry
Baffled doctors believe her condition is so rare she may be the only person in the world to have this complaint.
The condition means Madisson, who has spent her life at Musgrove Hospital, Taunton, Somerset, needs to be regularly fed and given medication through a tube and has to be watched at all times.
But now doctors are preparing to let Maddison move home after they agreed to implement a rigorous care routine from her own bedroom.
Her mum Tamsin Whately, 21, who had to move home to Trull, Somerset to be closer to the hospital, said she was ‘really excited’ to know that her daughter was finally coming home.
“It is the weirdest feeling in the world knowing that she will be in the bedroom next door now,”she said. “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.
When they gave the baby her first bottle she turned blue and had to be resuscitated.
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 became ill.
She has since undergone numerous operations, including a tracheostomy to help her breathe and a gastrostomy to allow her to be tube fed directly into her stomach, but doctors are still unable to diagnose her condition. She has been allowed home for occasional overnight stays.
“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,” says Tamsin, a nursery nurse who stopped work to look after her daughter. “She has an undiagnosed neuromuscular condition. Essentially she doesn’t have reflexes.
“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.
“She has learned to roll now and she won’t stop until she hits an object – she loves it. 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.
Once home Maddison will need 24-hour care. Nurses will watch her as she sleeps five nights a week and Tamsin’s mother Angie Whatley has offered to do the other two nights to ensure nothing goes wrong and give her exhausted parents, who have to watch her throughout the day, a break.
Maddison’s devoted mum says: “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.”
We wish Maddison and her family the best of luck in this new stage in their lives.
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