BELLARetrun to 22q Stories
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Hello, My name is Lisa. I have a 22-month-old daughter named Bella. Bella was diagnosed with 22q Deletion Syndrome a short time after birth. Bella was ready to come home from the hospital after birth and I went to get her from the nursery. When the nurse handed her to me I felt something was wrong. She was very pale and just felt like dead weight put into my hands. I ask the nurse to please check her before I take her home, but she said “she’s fine, that’s how newborn babies act.” Luckily for Bella and I that day there was a NICU nurse getting the other babies to be transfered to the new hospital. I asked her”PLEASE look at my baby, something is wrong.” She did and that’s all it took to know something just wasn’t right.They quickly transfered her to the new hospital, did all kinds of tests and found out she had CHD called Truncus Arteriosus — very low calcium levels — leading them to suspect DiGeorge Syndrome. That night they Life-Flighted her to Riley’s Chlidren’s Hospital in Indy. From there everything was confirmed: TA, DiGeorge, Hypocalacimia due to this syndrome. Bella had her first surgery to repair her heart at 1 month old. She spent over six months in the hospital. She is home now and doing very well except for some feeding issues, speech delays and chronic ear and throat infections. She is my Angel. I never thought I would get to see her grow up. Thank you for letting me share her story.