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
Praying you get all the answers you need Melissa.
Pediatric nurse talking here…you absolutely did the right thing. Absolutely.
And as I remember you and your family in my daily prayers, one thing that you wrote has been going through my mind as well…I’m sorry that you don’t have closure yet. I’m sorry that you have a cut that is constantly getting the bandaid torn off over and over. I can only imagine how hard it is to seek peace
when prccedural things like the medical examination are not complete yet.
Your faith is absolutley what is bringing you through this and always stay strong in it.
My daughter passed away in April and I still do not have a death certificate so I no how u feel!
Sorry to hear you still have no real answers, and happy that Owen’s heart will continue to provide life to the little girl who received it. Was praying that you would get closure after your meeting, instead of more questions. I’m still sending prayers your way for Jaden, Logan, & Weston for great test results.
I was hoping that you would have closure as well. Closure would at least allow you to move through this phase and onto the next, there is nothing worse than feeling as though you are in limbo; although…there will never be concrete closure…your faith will continue to give you strength to get through every day! I am praying for you and thinking about you all every single day. Keep your chin up and I’m giving you a virtual hug!
Answers may lead to more questions but…answers are good. I’m so glad you guys have some of them now.
I believe I know why things change constantly….to deepen our faith. That’s what it is. Because only He knows…and we have to trust that.
Love and prayers always, Melanie
I will continue to pray that Owen keeps vigil over his brothers, and keeps them all safe.
When Logan saw the cardiologist, was anything mentioned then? They should have picked up on any abnormality during that test I would think. Thank you for sharing, it just means more prayers are being sent your way!
Many prayers for you and your family as you try to find all the answers you seek. I know that your faith is strong so I can only remind you that God will not let you down.
Always the waiting game….I am tired of waiting myself. Scared of genetics…
Mel,
You are so wise beyond your years…(and well past my 2 that I have on you!!) I as well was hoping for better news for you and Doug. I so admire the way that you live, you are a survivor, and God’s plans for you are big. You are a tool of the Lord sent to spread your ministries to the world. There was a quote I saw that made me think of you and this post
“Fear knocked at the door. Faith answered. Low and behold, there was no one there.”
Hold strong to your faith, you inspire thousands, and are helping to heal so many. Speaking as someone who has donated to your family relief fund, (not much, but what we had available) I would encourage you to use some of the money in the Owenge Warrior Fund to pay for genetic testing if insurance for sure doesn’t cover it for the boys. I may be overstepping my boundaries and…of course it’s your fund and you guys will do what you want, but the thought crossed my mind – I’m sure I’m not alone.
*hugs and prayers* always!
Hello Melissa, I know you don’t know me but I am cousins with Jennifer Lenzendorf(another triplet mom). She had a post of your blog on her site about losing your little warrior. My heart breaks for you & your family. I have a family of my own & can never imagine what you have went through. I have followed your blog through all of this though & must say you are a very strong & inspiring person. First off I have to thank you so much for donating the gift of life. My dad had received a liver donation 1 year ago & we can’t thank that family enough for giving him this second chance at life with us. Second thing I wanted to contact you about was when my dad was in the hospital waiting for his liver transplant they found that he did have Prolonged QT Syndrome. Which led me & my sister to go & get tested for it. It came back that me & my sister also have Long QT & I have passed it onto both of my girls & my sister passed it onto one of her children. We have done a ton of research on this & also have been working with the UW Hospital & have been featured in magazines & on newspapers trying to spread the word of Long QT Syndrome. We did all have EKGs done but they are not 100%. So we did go forth & all have genetic testing done. My sister had no problem with her insurance covering it but I did fight my insurance for quite a few months to get it all covered(which it ended up being). Our family is now all on beta blockers(which we will take for the rest of our lives) but we feel so much safer knowing all about this now. I got so teary when I read your last post about that is what may have happened to your son. It has scared me to death thinking about losing one of my children to this. So I just wanted to reach out to you & let you know that if you have any questions or need anyone to talk to about this Long QT Syndrome, I am here to help in any way I can. Take Care & God Bless. Sherri Seitz
I also sent this to you privately on Facebook.
Hi, Mrs. Bissing. I’ve been praying for your family. I was the girl who emailed you the picture of Owen..with the Owenge color working! Have you received it? Did you like it?
I’m not trying to seem insensitive…I really have been praying for you and you are in my thoughts all the time.
God BLESS!!
Melly,
Your picture is beautiful!!!
My thoughts and prayers are with you Mel… Just always think on the positive side. God will always provide, you just have to believe. Everything will be fine.
Hugs and prayers.
Mia
I got my bracelet today.. I am devoting my entire outfit tomorrow to Owen….Owenge all the way! please know i continue to pray for you and yours……
I have been following your blog since this tragic thing has happened to your little boy. I have Long QT and I have passed it onto my youngest daughter and she is now 8. We are both on beta blockers and doing well. while the Beta blockers aren’t a promise nothing will happen it makes it less of a chance to have anything happened. My 8 year old has been on them since she was a new born. I myself have been on them since I was about 14 years old and have had not a bit of trouble. I go to the cardiologist every year and so does my daughter, (she sees one up at Primary Children’s as we live in Salt Lake city, Utah. ) we have the BEST Pediatric cardiologist up there. My oldest was tested when she was a newborn also but came back she didnt have it. We have all had the testing done both EKG and the swab. you can go to longqt.org and it will give you some info also. Good luck with everything. My heart aches for the loss of your little one.
there is also a website called sads.org that has a lot of info on it.