Thaddeus’s Story

Today’s Heart Month story is the story of Thaddeus Young. His mother Pee Funk has generously shared their story and pictures. I have done some grammatical and structural editing, but the story is still mostly her own words. Nothing to me is more powerful than these parents telling their children’s stories in their own words.

Thaddeus was diagnosed in utero with heart defects (ventricular septal defect, atrial septal defect, patent ductus arteriosus, transposition of the great arteries, pulmenory stenosis, and a tumor in his heart). VSD, ASD, and PDA are all different kinds of holes in the heart. Pulmonary stenosis is narrowing of the artery. Transposition of the great arteries is when the arteries are reversed and the O2 goes in a circle instead of going to the body.

He had a balloon septostomy at 1 day and open heart surgery at 5 days old. His surgery ended up being more complex than they thought and took 13 hours. The VSD was large and crescent-shaped. It wrapped around the heart. They used bovine to patch it. So much stitching was done that the electrical connection between the top of the heart and the bottom was lost. That caused a heart block.

He came out of the surgery on life support and in a coma and non-kidney dialysis. We almost lost him. He wouldn’t wake up and they were doing brain scans to see if he was brain dead.

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They day they wanted to talk about how long to stay on life support, he finally had a gag reflex when they suctioned him. That’s probably why he’s still here. The doctors said he should have woken up by then. They would give it another day, do another brain scan, and then we would talk. Then later they basically said, “Never mind, he has a gag reflex.”

I’m just really glad we didn’t take him off the ventilator. It still took days after they found the gag reflex for him to open his eyes. The doctors sent us home like, “Well, take him home and over time we will see if it affected his brain. Just be glad he’s alive.”

After surgery he developed JET heart rate, which converted to heart block. He also suffered neuro damage, paralyzed vocal cords (which caused him to aspirate feeds into his lungs), and kidney involvement. He went back into surgery at 15 days to get a pacemaker.

We went home on a feeding tube about 3 weeks later and tried to find a new normal. Thaddeus started feeding clinic, physical therapy, occupational therapy, and slowly his vocal cords improved. He started to make some progress with his movements and feedings and then, at 5 months old, they did the first follow-up echocardiogram.

We were immediately rushed to the hospital 100 miles away where they started tests and consults and eventually gave us a new set of diagnoses: dilated cardiomyopathy and heart failure. Two days later, Thaddeus had another surgery for a different kind of pacemaker that paces both sides of his heart (biventricular) and was sent home on a new regimen of medications. The hope was the dilation of his heart would come down and his function would improve. It improved slightly, but we now work with the transplant team (which is the ultimate next step) at Seattle Children’s approximately 6 hours away. We go approximately once a month for checkups and med adjustments.

I don’t meet any DCM (dilated cardiomyopathy) kids that were CHD (congenital heart defect) first and it scares me how that will come into play with the dilation stretching the repairs, etc.

Please “like” and share Thaddeus’s Facebook page “Thaddeus Young, Heart Warrior”: https://www.facebook.com/ThaddeusYoungHeartWarrior

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