This week started like any other. We had the normal responsibilities of life, but nothing too exciting, but then in five minutes, things changed on Monday afternoon. Micah came home sick from work, and we were contacted by Versiti. Versiti is the organ, tissue, and blood donation organization that we worked with last November. There was a change in a hearing schedule for a proposed bill, and they asked us to share Hannah’s Story at the capital on Wednesday. Of course, we were glad to be able to go back to Madison and share her story, but this time it was with the State Assembly Committee on Education. We were supporting AB-749. This bill is being sponsored by Rep. Franklin (the tall guy in the picture) and Sen. Testin (The same senator who is sponsoring AB-128, which we supported previously regarding first responders carrying epinephrine). AB-749 would require public schools to have some form of organ and blood donation education as part of their high school student education. This “education” is pretty open ended in it’s scope and only needs to be included once in the student’s high school years. It can be part of a health class or wherever and however the school board would like to include it. The reason for this change is that this topic had been part of the public school driving instruction program, but now a large percentage of young people don’t take driver’s ed through their public school Many use online coursed and many others, in cities, use public transportation and do not get their driver’s license until they are 18+ at which point they are not required to take the same training as a minor. So, this bill would ensure that at some point in their grades 9-12 education, they would be able to understand what organ and blood donation is, and maybe more importantly, what it is not. Young people are able to sign up to become organ donors when they get their driver’s license, so it would be appropriate for them to understand their decision. As a side note, even though a minor may sign up to become a donor, that final decision would ultimately be the responsibility of parent/guardian, until they turn 18.
Here is what I said:
Hannah’s life was marked by determination, hard work, and a love for education. She was a virtual school student with a life’s dream of going to college. Once she turned sixteen, she would wake up early, do school for a couple hours, go to work, then come back home to complete her assignments. She took dual enrollment classes in her last two years of high school and also during the summer and Christmas breaks. Hannah loved the education, the work, and the personal responsibility. Last fall her dream came true as she became an on-campus dorm student for the first time. She majored in Secondary English Education and chose Teaching English as a Second Language as her minor. Because of those prior efforts in school and at work, she started her first year on campus as a second semester sophomore with enough money saved to pay for her full four-year education!
Hannah loved college life, but the night after her nineteenth birthday, she swallowed just one bite of a gluten free brownie that was given to her by a friend. It apparently contained refined peanut flour, which made the peanut undetectable. We knew that she had a peanut allergy, but it had never been a big deal. We had only encountered it twice in her life, at ages three and six. Each time these episodes were mild and brief. We did go to an allergist and there she received her first EpiPen. Over the next thirteen years she became an adult, and we never had any issue with her allergy. BUT that Monday night, after she realized that something was wrong, she ran back to her dorm, threw up, and called us to come and to be with her. She did not take her epinephrine though because she felt that she was “OK.”
Her reaction seemed to be over with by the time that we arrived forty-five minutes later, but the situation took a drastic turn when she laid down to rest. At that point, she began to have sudden difficulty breathing, and then she passed out. We gave her epinephrine and called 911 immediately. Then I picked her up like a big limp rag doll and carried her outside to the arriving ambulance. I briefly sat her on my knee, facing me. I had one arm behind her back and the other hand at the base of her head, to hold it up. It was the most helpless feeling that a parent could ever have! As I looked at her lifeless face only inches from mine, I thought, “I can’t open an airway! Is this really happening!? Is she really dying in my arms!?” All I could do was to tell her that we were there, that we loved her, and that it would be “OK.” After I handed her off to the EMT’s, they took her quickly into the ambulance, but once inside, her heart stopped for three to four minutes. They were able to restart it, but her blood oxygen level remained dangerously low, and then for the next two and a half hours the doctors at the hospital tried to figure out WHY it was so low. Shortly after midnight they found that her right lung had collapsed. They quickly reinflated it and then she was transferred to Froedtert Hospital in Milwaukee. At six in the morning, we got our first real update on her condition. They were keeping her alive, but there was extensive brain damage! Only time would tell how bad it really was…
I had heard about organ donation, like most people, but it was never something that I seriously considered. It’s not really a situation that anyone expects to be in, but two days later, as we waited in the hospital, I got a text from my cousin. He was at the hospital too, but for an appointment of his own, and he asked to meet with me. He was a big, tall, strong guy and someone that I always respected, but as I walked into the cafeteria that afternoon, I saw that things had changed drastically. He was in a wheelchair, on oxygen, and had difficulty standing. He told me about the sudden onset of his lung condition and that he needed a double-lung transplant. His only hope was organ donation! As I talked with him and his wife and thought about their family, God helped me see the other side of organ donation. After our conversation, I shared these things with Janean, and we tucked those thoughts away in the back of our minds as we waited and prayed for Hannah’s recovery.
Hannah never came back to us that week, and late on Friday night, her heart began to slow way down from the swelling of her brain. More testing needed to be done, and as we waited in the darkness of that hospital room, realizing that we could be near the end of her life, Janean asked, “How are we ever going to survive this?” The response that God put in my mind was, “We need to Do Right: We will Breathe, Take small steps, and Keep moving forward.” When we saw the doctor rolling a chair in to talk to us that night, we already knew what he was going to say… He was about in tears as he told us the obvious truth of the situation. She was about to die and there was no more hope! It was at that point that we chose organ donation for our daughter.
So, on Sunday November 3rd we celebrated Hannah’s nineteenth birthday and one week later on Sunday November 10th, we held her honor walk and said our final goodbyes outside the operating room doors. At 3:57 our daughter’s life ended, but the lives of four recipients began again, two more received the gift of sight, and many more were impacted by our decision!
Organ donation isn’t something easy to talk about. Death, loss, and separation can create an incredible amount of apprehension for the donor while vulnerability, embarrassment, guilt, and shame can plague the recipient who understands “the price that was paid” to save their life. It’s a situation that no one wants to be in, but, despite the fear and emotions, one simple, foundational truth outshines them all, “Organ and blood donation SAVES LIVES!” We are supporting AB 749 today because we understand that saving lives begins with education. The beauty of a rainbow can’t come without the rain, and thanks to organ donation, we were able to add that type of beauty on to a very dark cloud in our lives.
We are blessed
If you would like to donate to Hannah Helps:
paypal.com/us/fundraiser/charity/5609126
Hannah Helps 