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meet lYlA

Lyla_Chiari Malformation

Diagnosis: Chiari Malformation

Last Updated: 11/21/21

Meet Lyla - an 8-month-old fighting multiple health conditions including Chiari Malformation, which is a condition where the brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small pressing on your brain and forcing it downward. Chiari Malformation is uncommon, but increased use of imaging tests has led to more frequent diagnoses which will require her to undergo brain surgery.

Lyla is truly a miracle baby as she also has to overcome Epilepsy, Apnea, Cerebral Palsy, and Sandifer Syndrome - a rare disorder that usually affects children up to the ages of 18 to 24 months. It causes unusual movements in a child’s neck and back that sometimes make it look like they’re having a seizure.


Lyla is a twin and since birth struggled with eating. At about two months old she began turning blue and not responding causing us to perform CPR.  At birth, she weighed 5lbs, but she kept losing weight. At 4lbs, she was admitted to the hospital and had an NG tube placed for 2 months before they decided she needed a G-tube because she had oral inversion and was unable to eat. She was placed on oxygen to help regulate her breathing because she is unable to do it independently.

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