Life is all about choices. From the simple ones we make every day to the ultra-complex that nothing can prepare you to make.
When you decide with your spouse that it’s time to have a family, you only think of the joy that will come. You think of the smiles, the things your child will do for the first time, like crawling and walking and seeing those sparkling eyes as they see you – their loving father.
I was completely unprepared to be sitting in a hospital as a doctor said, “My job will be to bring your 11-week-old daughter as close to death as I can possibly get her and then bring her back to health.” I remember thinking, who would ever say “yes” to this? I need to get out of here; this definitely cannot be an option for us. But there I sat, in stunned silence, knowing that not only was this an option for us – it was the ONLY option.
Quinn was born with Junctional Epidermolysis Bullosa – Herlitz, which is a genetic skin condition that causes outward wounds similar to extreme burns and ravages internal organs like the esophagus, lungs, stomach and intestines. The choice we faced was an extremely painful one: Do we bandage Quinn to the best of our abilities day after day and just watch her get sicker until she dies? Or, do we enroll her in a very young clinical trial that may improve her quality of life, but that is extremely challenging and might cause her more pain and anguish before she dies?
This was one choice in a long list that we never, in a million years, thought we would be forced to make.
The worst part of it was the choices never seemed like they had great outcomes – they were simply choosing the lesser of evils. It was always, do we need to do wound care today or would it be an acceptable risk to take and wait until tomorrow? Wound care meant physically harming my child, exposing horrible wounds to air and bleach-water – it was 100 percent necessary – but who says “Yes, I want to hurt my child today”?
When you see families like mine, offer us help in ways that might save us some time. Because we spend every free second trying to understand medical complexities we have never wanted to know about, and we do not want to make another choice.
Written by Marc Seymour
Marc is a dad to two kids and happily married. He loves to golf and spend time with his wife and family. His daughter, Quinn, was born with Junctional EB – Herlitz and participated in the Bone Marrow Transplant trial at the University of Minnesota Masonic Children’s Hospital. She passed away April 7, 2012.
