Baby with rare condition is born with adult sized tongue

A baby born with a rare condition has finally been able to go home after being hospitalised for months.

One-year-old Ava Grace Milton - known as 'Gracie' - was born prematurely and suffers from a rare disorder known as Beckwith-Wiedemann syndrome, which occurs in approximately 1 in 15,000 births in the UK.

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According to the NHS, common features of the condition include increased height and weight at birth or in childhood, asymmetry of growth, for example one arm or leg larger than the other, a large tongue size, low blood sugar in the first few days or weeks of life and umbilical hernia or other abdominal wall defect. They also note that some children with the condition are at risk of Wilms' tumour of the kidney.

Gracie was born with a large tongue, which affected her ability to eat.

“It was shocking," Gracie’s mum, Susan Milton, told Spectrum 1.

"So, you never go into parenthood, especially as first-time parents, wanting for your kid to be different or anything to be wrong with them. But I think it also answered a lot of questions that we had.”

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The family ended up taking Gracie to Blythedale Children’s Hospital, where Gracie was given feeding therapy.

“I’ve been working with Gracie since May. When she first came to us at Blythedale, she had not had a lot of experience with anything orally or in her mouth feeding-wise,” said speech language pathologist Jessica Meyer,

“So, we had to teach Gracie to pull her tongue back into her mouth. Also, how to move it side to side and elevate the tongue."

Gracie's progress means the little one could spend Thanksgiving at home this year.

“I think it just means everything; have family, have everybody celebrate her. To be able to have her around the table and actually eat, like I can't wait for that,” said Susan.

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The NHS explains that Beckwith-Wiedemann syndrome is caused by a chromosome abnormality.

"BWS is caused by abnormalities at chromosome 11p15. There are a number of different abnormalities that we see," they explain.

"The names are quite complicated, but are important to the doctors so they can give you the right advice.

"Most of these cannot be inherited and have a very low chance of happening again in the family."

Some can be inherited, and in these cases, there is an increased chance of it occurring again within the same family.

You can find more information here.