Baby Girl Born With Beckwith-Wiedemann Syndrome Smiles For The First Time


Little Layla King of St. Louis, Mi. was diagnosed with Beckwith-Wiedemann Syndrome while still in the womb and it caused her tongue to grow twice as large as her mouth, meaning it was always protruding. However, the 13-month-old baby girl has finally learned how to smile after corrective surgery was performed.

It was during a 30-week-scan that doctors discovered Layla was suffering with Beckwith-Wiedemann Syndrome. This is a rare condition, affecting one in 15,000 babies, tends to make one part of the body grow out of proportion to the rest.

As in Layla’s case, the syndrome can cause the tongue to grow twice as quickly as the baby’s mouth. There have been instances of the intestines of these babies forming outside of the stomach and this also happened to Layla.

Layla’s mother, Danielle Youngburg, 25, was scared that her baby wouldn’t survive when she was born four weeks early. Layla reportedly needed a breathing apparatus to keep her alive until surgeons could repair a hole in her abdominal wall.

The Mirror Online reports Layla had surgery at just two days old to reinsert her organs back into her tiny body, and she began to slowly recover. However, the problem with the size of her tongue remained. At four inches in length, the baby struggled to feed. What made matters worse was the fact that her tongue continued to grow to the stage where it was permanently sticking out from her mouth, putting her in danger of suffocation.

The baby girl had her first tongue reduction surgery at six months of age. However, the tongue continued to grow until she finally required a second surgery last month. Now at 13 months of age, baby Layla was able to smile for the very first time after surgeons removed a larger chunk of her tongue.

Speaking of her young daughter’s experience, Youngburg said, “Her tongue was so large she didn’t have any control over it, meaning it could have choked her at any point.”

“If she was lying on her back she could struggle to breathe and there was a risk she could have suffocated. Whenever she exhaled it sounded like a big dog’s heavy breathing.”

She continued by saying the tongue was twice the size of Layla’s mouth and was always sticking out. According to Youngburg, when the tongue was four inches in size, it would stretch way past her chin when Layla yawned.

As reported by Metro, Beckwith-Wiedemann Syndrome (BWS) is congenital, meaning it is present at the baby’s birth, and occurs in approximately one in 15,000 babies. The symptoms of the syndrome include increased height and weight at birth or in the child’s early years.

As in Layla’s case, it can cause large tongue size (macroglossia), but it can also make one limb bigger than the other (hemihypertrophy).

The syndrome also tends to cause low blood sugar in the first days or weeks of the baby’s life (neonatal hypoglycemia). Reportedly some children with the syndrome are at risk of Wilm’s tumor of the kidney.

Youngburg explained they chose to go for surgery early on to ensure Layla wouldn’t need jaw surgery later in life, as the large tongue was deforming the shape of her face.

The relieved mother also hopes that by having the operation, it would stop passersby making cruel comments about her daughter, saying she looked “weird” because of her enlarged tongue.

She said: “Every day I took her out someone would say something about her tongue and why it was always sticking out of her mouth.”

“Instead of people making jokes all I wanted was for them to ask about my daughter’s condition, only children were brave enough to ask me why her tongue was the way it was.”

She went on to say that she couldn’t understand why people couldn’t just talk to her so they could understand Layla’s condition, adding that thankfully her daughter can now live a normal life.

After the second surgery was a success, Layla will now be able to eat, breathe and smile properly for the first time in her life.

Anyone seeking more information about Beckwith-Wiedemann Syndrome can visit this website.

[Photo via Flickr by Ale Art, cropped and resized/CC BY-ND 2.0]

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