Little Fighter Jackson Cooney

On May 20, at the height of the global COVID-19 pandemic, Stephanie, Tim and big sister Riley welcomed Jackson Timothy Cooney to their beautiful family. Giving birth during a pandemic brings with it many challenges but for Steph and Tim, these uncertain times were only amplified by the discovery that sweet baby Jackson was born with a heart defect in addition to rare malformations that would completely change the course of his exciting arrival.

Below is a little of how the story unfolded for my loving best friend, and her little family.
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During our routine 20-week ultrasound, it was discovered that Jackson had a congenital heart defect (Double Outlet Right Ventricle with VSD) that would require surgical repair within the first few months of his life.

When Jackson was born, he did not cry as a newborn should, and he was brought to the NICU immediately and it was determined that he had a Laryngeal Cleft (rare malformation in which there is an opening between the larynx and esophagus enabling food and liquid to pass through the opening of the larynx and into the lungs) as well as a Glottic Web (a rare congenital laryngeal anomaly where excess tissue fuses the vocal cords together) causing him to only have 20% of his airway open.

Within his first 24 hours, Jackson underwent two surgeries to start the process of repairing his airway and inserting a breathing tube. After a couple weeks of healing from these procedures and working on weaning off ventilator support, it was determined that the best course of action would be for Jackson to undergo a Tracheostomy as well as have a Gastronomy Tube placed as eating orally would cause great risk of aspiration. After a 6-week NICU stay, he has successfully weaned off ventilator support and was able to be transferred to a children’s rehabilitation hospital to transition to being able to hopefully come home within the next few weeks for a short while before returning to the hospital to undergo his heart surgery and a subsequent 2-3 week stay in the Pediatric Cardiac ICU.

As Jackson grows, over the next few years he will need to undergo multiple airway reconstruction surgeries to hopefully repair these malformations and subsequently have the Tracheostomy tube and Gastrostomy tube removed.
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Stephanie and Tim are two of the most selfless people you could ever meet. They give endlessly of their time and talents and never ask for anything in return. They are generous in every aspect of the world and have cared for countless others when they’ve needed it most.

I can’t imagine what they have already been through and the struggles that they will continue to face. Jackson hasn’t arrived home yet but the medical bills have already started to line their mailbox. Jackson will require around-the-clock care for the foreseeable future. Stephanie will be unable to work because she needs to care for Jackson full time, along with also caring for their energetic and beautiful toddler Riley. Tim is the sole provider for the family. The stress of excessive medical bills is something no family wants to endure, especially when all of their collective energy should instead be focused on the care of their beautiful babies.

This GoFundMe page has been created to try to ease some of the financial stress for the family during this difficult time. Jackson is an incredibly resilient and sweet baby but he has an uphill battle to climb. Let’s help them climb this mountain!

Please consider donating to this sweet family as they work on bringing Jackson home. We’re forever grateful for your sharing of this story, your donations, positive thoughts and prayers!