“You go from a normal morning to, an hour and half later, my world is gone, and then having a nurse go ‘I have to ask you something really tough, but have you ever thought of this,” Jessica Hauk recollects that morning in July 2011 when her son, Evan, died at the age of 13 after getting accidentally shocked while preparing for a day of fishing.
That ‘really tough’ question the nurse asked Jessica that day was a question many family members get asked when their loved ones pass - would you want to donate body tissue or organs for others in need.
Just as she remembers that day and the tragedy, Jessica also remembers what her response was to that question. “When she said that, I was like ‘yes, let something of his live on, let him help other people still.”
Nearly four years later, Jessica said it was one of the best decisions she could have made, as it not only helped others, it helped her family deal with the loss of a child so full of life. “I don’t think we would be in the spot where we are as a family today without it, I really don’t…..It pulled us through a lot.”
April is ‘Donate Life’ month, making people aware of the need and benefits of organ and tissue donation. For most people, the thought usually goes to vital organs, and the rush for transplants, but as important to these donations are tissue, items like tendons, bones, and other pieces of the body like corneas, things that can greatly benefit those living with the inability to walk or see clearly.
“They are blown away about the impact, because they always think about organs,” Miranda Zuhlke, representative of RTI Donor Services, which works with Grant Regional Health Center in helping families donate tissue of loved ones.
Since 1999, families worked with Grant Regional to donate tissue to impact 4,900 others across the globe in improving their lives.
Jennifer Rutkowski, Director of Nursing at the hospital, said that there are a lot of myths out there about tissue donation, like people would not be able to have an open casket. Rutkowski said they work with all of the staff at Grant Regional so they are able to talk about what tissue donation actually is, what happens, and how it can help.
For example, enough tissue can be donated to help up to 50 different people, and unlike organs, tissue can be preserved to be used up to five years after its donated, although the need is so great it never waits that long to be utilized.
Jessica said that in the case of Evan, they wanted to make sure he was able to wear his football jersey, so they donated tissue from his legs, the heart valves, as well as his corneas so two people could see clearly. She said the only way you would have been able to tell Evan was a tissue donor was the plaque that sat next to him at his funeral.
“ What you hear is ‘oh I didn’t know that, I wish I would have done that,” Rutkowski stated.
Who it helps
Down on the lower floor of Grant Regional, physical therapist Corey Weydert works with residents every day looking to come back from traumatic injuries to regain mobility they once had.
For Weydert that mission to help people return to independence is meaningful because he nearly lost that ability to move freely himself, which cost him time with his family, and nearly cost him his profession.
It was in June 2013 when Weydert suffered an injury to his right knee and leg working at a sports clinic testing students. “I was moving backwards and got tangled with a student who was crossing from one testing station to another,“Weydert noted. In that split second, his four quad muscles retracted in a complete avulsion.
The doctors Weydert saw in Madison wanted to try a new procedure - Weydert was their first attempt with the technique.
The procedure failed.
So again, Weydert was back under the surgeon’s knife, looking to try and anchor his tendons again. The second surgery failed, as those anchors immediately pulled out both in surgery, and days later.
For nearly two years, Weydert’s mobility was severely diminished. He spent 10 weeks after each surgery in a hospital bed in his living room, unable to even be able to get to the bathroom in his home. Family vacations were cancelled, and the only thing allowing him to get around after recovery was a brace that was holding his femur and tibia together, and crutches.
“There is just really no force, your leg buckles all the time,” Weydert said of the condition of his leg.
If he could not have done any more for his leg, Weydert said there would have had to been real changes to his life. “Wear a brace and go on disability, and not be able to work, as a job as a therapist anyway,” he stated.
While he was recovering from each surgery, Grant Regional was in the process of hiring orthopedic surgeon Brad Binsfeld, and during the interviews, Binsfeld noticed Weydert on crutches. Talking about his condition, Binsfeld stated he thought the best idea would be for an allograft - which takes cadaver tissue to reconnect the knee and leg.
Weydert’s doctor agreed, and last summer he had the surgery. After months of therapy and recovery, Weydert was again able to move on his own without having to have a brace and crutches. “It felt great getting back to doing those things, and without that graft, I wouldn’t be to that point,” Weydert said, noting how on that first family vacation in years, he was able to do simple things like walk up a berm on a beach.
Making lives better
“I see how depressed a person can get for not being able to do the things a normal person can do during an average day,” Jessica said, talking about she has seen in her own family injuries like a torn ACL can severely limit mobility.
“If a graft went to a dad, who could not go and play with his kids, and now can, its just not affecting him, its affecting his kids and everyone around them,” Jessica said of the total impact one piece of tissue donated can have.
Hauk said that one of the biggest issues facing families when it comes to the question of tissue donation is whether they talked about it at before tragedy happens, as it may be a difficult think to try and contemplate so close to that raw emotion, and wondering what their loved one may have wanted.
“A lot of people cannot make that decision if they hadn’t thought of it,” she said. “If I hadn’t done it, I would be regretting it for every day of my life.”
For Jessica, the idea of donation has been her since she was the age when Evan passed, as she lost a classmate who had drowned. She said she remembered that her friend’s family had donated the corneas, and that stuck with, and she had talked about organ and tissue donation before this happened to Evan.
“In my family, we would always say ‘if anything ever happened, and we’re gone, use whatever you can, make someone else’s life better….do whatever you can with the rest of me,” she said.
She noted that faith helped her, the separation of the spirit and the body at death, in making that decision.
“It has helped heal our family so much, because we know that across the country, and in another country, that people are living better because of Evan. How many people can say that?” she noted.
In total, more than 25 people benefited from Evan’s donations across eight states, and the United Kingdom.
“It was our shining moment of hope through a lot that was really, really bad,” Jessica stated.
The benefits of tissue donation are not just for the recipients but the donor families as well, as the Hauk family attests to.
Weydert noted that he he felt to reach out to the family of his donor in November of last year. Tucked away in his files given to him in surgery was contact information for him to reach out to the family of the person who gave him back the ability to walk, through the donor services.
The letters are suppose to be general - no full names, no specifics on their lives for this as it can be difficult for both sides, but Corey had to explain how this allowed him to return to the life of his children, how it allowed him to get back to work as a therapist.
For months, Corey got no reply, but in March he received a letter from Karen, the widow of his donor, Emmett, who had died from the aftermath of a stroke.
“He always wanted to help the player who did not quite have the skills to play,” Karen wrote to Corey, talking about her husband’s love of sports, and watching their son play baseball.
“I get emotional there because that’s me, that’s some of the things I have done,” Corey responded.
Emmett had not talked about tissue donation, and that was something Karen and their son had to decide the day Emmett died, more than a year before his tissue was placed inside Weydert.
“After receiving your letter, it was one of the best, most positive decisions we could have made that day,” Karen wrote. “Emmett loved kids, and he would be happy to see this allowed you to get back to a normal life with them.”
“I pray every day I get a letter,” Jessica said, wanting to hear back from someone who has a better life, thanks to Evan.
Advocacy and making wishes known
Jessica has thrown herself into advocating for people to talk to their loved ones about tissue donation, attending the Rose Parde where Even was honored on a donation float, traveling to Florida to talk to the specialists who handled Evan’s donations, and speaking whenever she can to talk about the benefits.
“Its not completely selfless, because I get to share his story and tell people about him,” Jessica said.
Weydert said talking about it before allows for a conversation, talking about stigmas about it, about separation of body and soul.
It can also mean a talk about how your loved one can live on. “We all know were mortal, but there are ways to be immortal,” Weydert said. One can have a child, one can write a book, one can donate money to get a building named after you, or one can donate part of them to live on in another.
In Wisconsin, one can go to the online registry at yesIwillwisconsin.com, to legally authorize a donation.