Tiny Four Pound Baby’s Failing Heart

“Adrian had his first open heart surgery at one week old”

Delivered at 31 weeks, Adrian was a tiny four pounds at birth. He had a rough start as a newborn, needing what would be the first of many heart surgeries when he was only a week old. Adrian was diagnosed with hypoplastic right heart syndrome, a congenital heart defect in which the right ventricle fails to grow and develop appropriately. An underdeveloped ventricle cannot contain the proper amount of blood pumped from the right atrium and leads to immediate heart failure. His doctors had to open up his little chest to close the hole in his heart. For his next surgery, the infant needed the blood flow in his heart re-routed. Adrian now visits the doctor once a year to undergo a heart catheterization. The procedure checks the blood flow in his heart to determine if he needs another open heart surgery.

Beyond the issues with Adrian’s heart, at two years old he was diagnosed with cerebral palsy, a disorder of movement, muscle tone, or posture that affects muscle control and coordination. Cerebral Palsy can also affect vital motor skills and muscles such as breathing, bladder and bowel control, eating, and learning. To treat the condition, for two years Adrian had Botox injections in both of his legs for his muscle spasticity. He currently wears leg braces every day and has special leg braces designated for night time. Adrian uses a walker at school for long distance mobility. He also underwent surgery for muscle retention in his legs.

When Adrian was five, doctors discovered that he also has epilepsy, a disorder in which nerve cell activity in the brain is disturbed, causing seizures. They can range from as mild as simply staring off into space for a few seconds to as severe as having full body convulsions. Adrian takes medication to control his seizures. Without it, he suffers from grand mal seizures, a rare type that involves a loss of consciousness and violent muscle contractions. For Adrian, they can last up to 45 minutes.

Now 12 years old, Adrian has a very social personality and loves making new friends. He is talkative and can find humor in most any situation. His favorite activities include reading Star Wars and marvel comic books, playing with his Godzilla action figures, and watching wrestling matches. Adrian likes learning about presidents and dinosaurs. He enjoys trips to the zoo and would like to be the mayor of his hometown when he grows up. He’s got our vote!

Kids Wish Network is hard at work planning a once-in-a-lifetime experience for Adrian; make sure to stay up to date by checking back soon for all of the cool details of his incredible wish!


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