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Stacey and Shawn were thrilled to welcome their new baby girl into the world and excited to take her home when Stacey and a nurse noticed something strange. Just as they were about to be discharged from the PLC, MacKenzie raised her right legs arms up and down together in a sort of rhythm. A pediatrician put in a referral for her to see another doctor but told her parents in the meantime to video any similar episodes. They were told if the movements continued while holding her arms down there were a chance the episode was a seizure. Her parents took her home and watched her closely, and captured another multiple episodes on video. When she was only five days old, they brought little MacKenzie to emergency. After tests, blood work, MRI and EEG, doctors determined MacKenzie had focal cortical dysplasia – an abnormality in the brain that can cause epileptic seizures. Doctors tried a few different anti-seizure medications, but her seizures only increased and lasted longer and longer for each one – at one point she was having 10-40 a day. As they stayed up all night watching for and counting seizures while she slept, MacKenzie’s parents began to feel more like nurses than parents. This, they thought, was just their new norm. All that changed though when they met Dr. Barlow, and then Dr. Bello and Dr. Hader who had a new plan to try to stop MacKenzie’s seizures – a surgery that would remove the brain abnormality and hopefully most of her seizures. It was welcome news.
When surgery day came on Nov. 3, 2015, when MacKenzie was only three months old, Dr. Hader removed two pieces of MacKenzie’s brain. And after, she was a whole new baby! They saw smiles they had never seen, and she was attempting to hold her head up. Most importantly, her focal seizures had stopped. She still has some infantile spasms but is on a new medication they hope will do the trick to control them.
Stacey and Shawn are grateful neurology experts never gave up on their newborn baby MacKenzie when she developed medication-resistant epilepsy. Thanks to a surgery and new medication, and support from their new hospital “family” they are enjoying life with their happy, growing baby girl.