My granddaughter Delaney was born this July, a seemingly healthy apple of her mommy and daddy's eyes. At 6 weeks of age, she began to have difficulty holding down milk and would frequently cry as if she were in pain. They took her to her pediatrician, who prescribed medication for reflux and closely monitored her progress. Delaney began losing weight and got sick after feeding more and more often. Her doctor recommended bringing her to the hospital, which they did on August 28th, 2024, where she was admitted.

After multiple tests and scans, she was diagnosed with failure to thrive due to Complete Atrioventricular Septal Defect (CAVSD) of her heart. This heart defect also affects her breathing because her heart is working so hard, and there is fluid in her lungs, making it difficult for her to eat as she needs to stop and take deep breaths, so she gives up. She experiences pain while eating, which they haven't yet been able to detect why.

Delaney will need open-heart surgery to correct the defect, ideally once she reaches 12 pounds. Because of the difficulty in gaining weight as well as her continual weight loss, this could take a few months.

She cannot be discharged until she is stable enough to go home, where her mom and dad will continue with the tube feedings until she is ready for surgery.

As you can imagine, a prolonged, intensive hospital stay with multiple diagnostics, medications, and a future major surgery is overwhelming for her parents. Her mom has not left the hospital for a moment since Delaney was admitted, and dad missed several days of work and is now back and forth between work and the hospital. The cost of medical bills, food, gas, and parking adds to their stress.

While we, as their family, are supporting them where we can, this will be a long journey for them and their precious Delaney. We appreciate that you have taken the time to read Delaney's story and are grateful for any help you can provide.