Support Jackson Wylie's Fight for Life

Jackson Wylie Sayle was born October 4, 2024, to my son Ethan and his wife, Kyley. He came into this world in St. Petersburg, Florida. We did know ahead of time that he had a heart defect that would require surgery. Initially, Mom and Dad were told that Jackson would need surgery during his first week of life. They were also told that he would potentially have kidney function problems as well. What we did not know was that there would be so much more. This sweet little guy, born weighing in at a whopping 6 lbs 12 oz and 18.9 inches long, has been fighting so hard to keep on. He has been at Johns Hopkins All Children’s Hospital in St. Pete’s since birth.

What we do know currently about his little body:

Heart: Double outlet right ventricle dysplasia, the pulmonary valve has mildly thickened leaflets, and large ventricular septal atrial defect. The hope is for surgery when he has a chance to get stronger.

Facial: Left nostril stenosis. More is to come on this as his team of doctors is waiting for scan results.

Kidneys: Renal dysplasia or renal disease. We fully expect him to be on dialysis. He cannot receive a kidney until he is 1 year AND 22 pounds.

Spinal: More to come.

Jackson underwent exploratory surgery on November 7, 2024. His surgeon discovered that his duodenum is “accordioned” back and forth instead of the normal smooth. This explains why the team has had difficulty placing a feeding tube correctly. A gastrostomy tube (G-tube) and a jejunostomy tube (J-tube) were put in place so he could begin receiving his mother's valuable milk directly into his stomach. Jackson remained intubated and partially sedated for scans to be done by his care team on November 8. As one can imagine, it is hard to get an MRI on a little guy who wants to move and has no concept of what staying still is. We had hoped he would be extubated, and we would know more on the eighth. MRI scans of his brain, spine, and face were performed to determine if there were other genetic abnormalities. We are anxiously awaiting the results of those scans. Unfortunately, he was not able to be extubated yesterday; the scans took quite a while to perform. The plan is to extubate him today, Saturday, November 9, 2024. His amazing nurses will begin feeding him through his G-tube today as well.

Jackson Wylie, or as I refer to him, Grandma’s JDubs, has fought every day of his life to remain here on earth with us. It is all extremely overwhelming, to say the least. Mom and Dad have been doing all they can to ensure that Jackson is surrounded with love and cuddles. Initially, Mom and Dad were blessed with being able to stay locally at the Ronald McDonald House. Ethan had to go back to work, but Kyley stayed and continued to stay with Jackson. Unfortunately, medical bills pile up when you are trying to make it on a single-income basis. Adult responsibilities wait for no one. This week they made the difficult decision that Kyley would have to return home to Hudson, Florida (a little north of St. Petersburg) so that she could return to work to help with the insurmountable medical bills that are piling up. I hope to help as much as we can to relieve some of the stress due to the medical bills. Insurance helps, but as most of us know, it DOES NOT cover it all. Jackson has a long, hard road ahead of him, and we want to do everything we can to encourage him to continue to fight.

The love and care he has received and continues to receive while being at Johns Hopkins has been such a blessing. We could not ask for a better team to provide care for our newest family member. We are forever thankful, grateful, and blessed for all that they have done and continue to do for Jackson and our family. The volunteers who make special sheets for all the infant beds in the CVICU, NICU, etc., are adorable. They even knitted and crocheted Halloween costumes for these precious little bundles of joy! If you can help in any way, our family would appreciate it. If monetary donations are not in the cards, we would all appreciate prayers, happy thoughts, and good vibes sent to Jackson, Madison, Ethan, and all the providers, nurses, volunteers, and staff at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, and all over the world!