As I pulled into the parking lot of the public service building, I noticed a garage door with “Medical Examiner” above it. Owen was here. That’s where he entered and left this building. I’m sorry I wasn’t here with you Owen …
We went up the elevator and waited for the medical examiner to return. She took us through the locked door and into a small meeting room. Stacks of papers were on the table … I’m talking 11″ of papers. Has she read every last page? I only knew Owen for 6 months and this doctor has read all this information on him … who knows more about Owen?
She went down the list of all the possibilities Owen’s death could be. There was nothing anatomically wrong. No birth defects. His air way wasn’t swollen at all. His cultures came back negative. He didn’t have a viral or bacterial infection. She looked at his brian stem to see if there was signs of it not functioning correctly. Nothing still.
That lead her to look at a cardiac explanation. Without having Owen’s actual heart beating, she looked back at his records from Children’s Hospital. On his first EKG, he had a prolonged QT then on his next it had shortened a little. This was explained, at the time, by the cooling process. It was longer when he was cooler. Made sense at the time, but now raises questions. There is something called Prolonged QT Syndrome. This is caused by differences in the potassium and sodium in the heart which would cause it to mis-fire and cause possible sudden death. (Please know that I DO NOT have a medical degree and am simply ‘regurgitating’ the information the medical examiner gave me.)
She continued to explain that there is a genetic test we can run to see if Owen had one of the several mutated genes that cause this. However, just because he doesn’t have the gene, doesn’t really mean he doesn’t have the syndrome. Another way to detect this is with an EKG. But still sometimes it goes un detected. The children’s cardiologist said that the other boys absolutely should have an EKG as well. There is also the option to have a genetic test, but those aren’t covered by insurance.
The positive side? We have the knowledge to be cautious with Jaden, Logan and Weston. We know that it wasn’t Owen’s bed. He didn’t suffocate. He wasn’t sick and I just didn’t pay attention to the signs. This Prolonged QT Syndrome is hard to detect … it doesn’t have visible symptoms. There wasn’t anything we could have done that would have prevented this from happening.
This is the reason why we opted to do the autopsy … we wanted to be open to his information. It’s a relief that Owen’s death wasn’t really preventable. I don’t have to sit here wondering if it was because of his crib or if I did something wrong. But on the other hand, what if one of the other boys has this? What if we have another child that would have this? Could I lose another baby?
I supposed I just need to give prayers of thanksgiving that we know this now. I’ve got a call into our pediatrician to see if he will refer the boys to have EKGs. Even if the tests all come back normal, they could still have it. Nothing is certain. Nothing is 100%. But that’s what faith is for. It’s trusting in something you can’t visibly see or prove. It’s closing your eyes and believing with your heart and gut.
I also asked if the little girl who now has Owen’s heart would be effected. The medical examiner said she even called the donor network and they said she should be fine. Since his heart will grow with this little girl, her DNA will become apart of his heart and it will change with her. Just because it might have mis-fired in Owen, doesn’t mean it will in the little girl. Phew! I have this almost buyers remorse … I feel like I gave this little girl a ‘bad’ heart. I don’t want her parents to be fooled … thinking she’s saved and will live, only to die from the same thing that killed Owen. I didn’t mean to hurt her or put her in any danger. I want her to live, to have Owen’s heart beat inside of her.
I thought that when Owen went through all of those post mortem testing, they would catch everything. They are so careful, I thought it was guaranteed that his heart, liver and kidneys were all healthy. Only now his kidneys had a vascular issue and his heart might have had this QT thing. Blasted. Why is nothing for sure? Why does everything change. Just when you accept one fact, it proves to be something else. This is so dragged out. I thought this would all be wrapped up by now. We still don’t have a death certificate. My child has been gone for almost two months, yet legally I can’t prove it. I have his ashes, but that doesn’t prove he’s dead. I have his taken apart crib, his empty car seat, his unworn cloths, the cross of his casket, yet I can’t prove anything.
Thank you for all of the prayers and thoughts. I hope we didn’t scare you all terribly. For now, we just do more waiting …
Love, Mel