Help Baby Daxon Thrive & Overcome Heart & DS Life Obstacles!

Daxon Kai Cowper was born 3 weeks early at 1:05 am on February 15th, 2024 (Just missed Valentine’s Day!) weighing 5 lbs 11 oz. We noticed some difficulty breathing, wanting to wake up, not gaining weight and taking longer to feed due to exertion around his one month checkup. That’s when we found out he was born with a large ventricular septal defect (VSD), large patent ductus arteriosus (PDA) and large left ventricular enlargement. Daxon began medication to help him remove the excess fluid from his lungs from the leaking blood flow along with a regiment of fortifying his breast milk to provide him with extra calories per ounce to compensate for the extra calories used by his heart and lungs. At 8 weeks he developed a virus creating congestion which complicated his feedings since he couldn’t breathe well through his nose. He stopped eating completely around 2 AM in the morning on May 10th and was admitted to the hospital that same day to help him with a feeding tube. Daxon was hospitalized 19 days in Greenville Memorial Hospital trying to return him to bottle feedings and fighting his need for oxygen. No progress was made other than him working through his virus while at Greenville Memorial. We were then transferred to MUSC in Charleston on May 29th where a repair surgery date of June 7th was set. At the same time, he tested positive for a new virus he had picked up at Greenville Memorial which put his new surgery date in jeopardy. Daxon was put on a better method of oxygen at MUSC and was able to be worked completely off oxygen within a few days. He continued to not want to eat by mouth but that is common with cardiac babies especially if they possibly experienced aspiration (which was possible with his congestion issues before). Around May 31st, we got genetic testing results that showed he was positive for an extra chromosome indicating a diagnosis of Down Syndrome – Trisomy 21. MUSC did a magnificent job performing and completing a successful surgery, repairing all defects. Typically, surgeries are not performed until 4-6 weeks post virus, but the surgeons, cardiologists, and other specialists deemed his need for surgery higher than the need to wait with consideration that his viral symptoms were minimal to none. With the recent viruses at play though they expected him to be on the ventilator longer than the typical baby by a day or two. He was taken off the ventilator 2 days after surgery successfully and his healing is progressing well. After discharged from surgery there will be a lifelong continuation for proactive care and frequent screenings to monitor Daxon’s Trisomy 21 and provide him with the best life ahead. Love is the best medicine of all and we intend to shower him with all things love and more!

Medical conditions:

1) Large Ventricular Septal Defect (VSD) is a heart condition characterized by:

The right ventricle working harder to pump extra blood at high pressure into the pulmonary artery and lungs.
The left ventricle losing blood to the right, leading to increased pumping effort to supply enough blood to the body.

2) Moderate PDA

Patent Ductus Arteriosus (PDA) is a persistent opening between the two major blood vessels leading from the heart. The heart problem is present from birth and it is a congenital heart defect.

3) Moderate Left Ventricular Enlargement

4) Trisomy 21

Also known as down syndrome or Down's syndrome which is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with developmental delays, mild to moderate intellectual disability, and characteristic physical features.

All funds raised will go towards paying for his two hospital stays in May and June of this year. Additional funds will go towards proactively caring for his health and development in the coming years.

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