Sharing the gospel of organ donation

Written by MCJStaff   // March 17, 2014   // 0 Comments

Heart transplant recipient Dominique Johnson holds his  old heart, which grew to two times its normal size before he received  his new heart. Ironically his father, noted community activist and  aldermanic candidate Ray Harmon was himself a heart transplant recipient  in 2007. He died of natural causes several years ago. Dominique is now a  student at Cardinal Stritch College and plans to play on the school’s  basketball team.

Heart transplant recipient Dominique Johnson holds his
old heart, which grew to two times its normal size before he received
his new heart. Ironically his father, noted community activist and
aldermanic candidate Ray Harmon was himself a heart transplant recipient
in 2007. He died of natural causes several years ago. Dominique is now a
student at Cardinal Stritch College and plans to play on the school’s
basketball team.

Brought up in a strict Church of God in Christ (COGIC) household, Darrell Hines was raised to believe in shunning traditional medical treatment. God would take care of the sick, his family believed. The future COGIC bishop adhered to that interpretation of biblical scripture until his wife, Pamela, suffered from complications of childbirth and required a blood transfusion. Without it, she could possibly die, physicians told him. Hines prayed extensively over the matter and ultimately agreed to the transfusion.

That seemingly simple medical procedure saved his wife’s life, he told clerics and community leaders during a recent luncheon at the Bacchus restaurant, located inside the Cudahy Towers, which rests on a bluff near the lakefront. The luncheon was coordinated by the Blood Center of Wisconsin and sponsored by renowned restaurateur Joe Bartolotta. Its purpose was not only to satisfy the palates of the 45 invitees with one of Bartolotta’s signature dishes, but also to feed their minds with the knowledge that through organ donation and blood drives they could save hundreds of African American lives.

Organ, blood and tissue donation is a noble gesture that has not resonated enough in the African American community where a disproportionate number of people of color are in desperate need of a transplant or transfusions. Even as the numbers of those in need swell, African Americans rank at the bottom of ethnic groups when asked to consent to donation.

Bishop Hines, who along with his wife is an “Ambassador for Organ Donation,” opened the program with his personal testimony on the importance of blood and organ donation. In addition to his wife, who needed nine units of blood, he said his father later suffered from leukemia and required blood and marrow transfusions. That procedure added 19 years to his life.

Bishop Hines’ mother also required blood for a major medical procedure. “We are a people of faith,” he told the audience, “and I personally thank God for the organ donor network. We must spread the word to our congregations about the importance of organ donation.” The pastor of one of Milwaukee’s largest Black churches, Christian Faith COGIC, Bishop Hines said he frequently engages his congregation on the importance of donation, and has sponsored numerous blood drives. Recognizing that many African Americans shun organ donation out of a misinterpretation of scripture (including the belief that they must be ‘whole’ on Judgment Day), Bishop Hines said, “We need to get rid of the (spiritual) fear. As spiritual leaders, we must show that information is life.”

Little new information was shared during the luncheon that I hadn’t heard before, although the personal testimonies were emotionally moving and in one case, tearful. As a donor parent, I have worked as an advocate for organ donation for over a decade. It is not only an issue of critical concern to the African American community, both nationally and locally, but also a personal crusade that is dear to my heart. As you read this, there are over 300 local African Americans in desperate need of kidney transplants in Milwaukee. Yet less than 20% of us are on the donor registration list. Nationally, thousands of people of color face unnecessary deaths in part because less than 50% of us are willing to even consider donation. The reasons for that dichotomy have not changed over the years: Religious superstition and false biblical interpretations, distrust of the medical community and a misguided fear that physicians will terminate Black lives prematurely to secure organs are among the most cited reasons African Americans refuse to participate in the life saving program.

Ironically, I used to criticize my people for their ignorance or misguided beliefs. That is, until my son died and some of those same superstitions crossed my mind. Fortunately, just prior to Malik’s death, I had authored an article on donation, and the information I had provided to others about the possibility of a life saving gesture flooded my muddled mind as I sorted through the emotional trauma of losing my oldest child.

Donation helped relieve some of the pain of my tragic loss. Malik dedicated his life to education and service to our community; my God spirit told me he would have agreed to that final gesture. I don’t know everyone who benefited from Malik’s donation, but I was told of several, including a little girl who now views the world through his corneas. Hopefully, she can see the world as he did. Following Bishop Hines, Bartolotta himself provided an empowering story about how donation impacted his life. Like his father before him, Bartolotta suffered from kidney failure and had to undergo dialysis. He recalled as a child sitting with his father during dialysis and “looking around and seeing many mostly African Americans in the treatment room.

“It didn’t dawn on me then why so many of the patients were Black,” he told the audience, “but now I know, and it’s heartbreaking.” Ironically, 20 plus years later, Bartolotta found himself in an identical situation to his father’s. Whether because of genetics or lifestyle, he faced a life of uncertainty and most assuredly dialysis. He brought up the subject during a family dinner last year, and was surprised when his brother-in-law offered to give him one of his kidneys. Kidneys are one of the few organs that can be transplanted from a live donor.

Today, Bartolotta is healthy. And thankful. The experience prompted him to join the Organ Donor Network advisory committee and to volunteer time, energy and resources to promote awareness about organ donation. During his first meeting with the group (I’m also a member), the restaurateur questioned what was being done to educate African Americans on the subject. Even though he was impressed by the marketing and educational strategies being employed, he recognized that much more needs to be done. He immediately volunteered his business for the luncheon and helped organize the discussion with Black leaders. One of the most impactful—and personal-- presentations was provided by Kitchy Johnson whose son Dominique recently followed in the footsteps of his father, Ray Harmon, and received a heart transplant.

Dominique and his father’s “heart” wrenching sojourn (no pun intended) intercepted with my life’s journey at several intersections. Dominique and I bonded when I served as a teacher’s aide for Malik’s fifth grade class at the Young Leaders Academy for the remainder of the school semester following his death in March of 2003. Malik died on his 27th birthday in a car accident. Dominique was a member of what he and his fellow students called, ‘Holt’s Kids of Kemet,’ and like all of Malik’s students, they shared a love for their mentor, and partly because of him, a true appreciation for education and African culture.

My work in Malik’s classroom served as a mechanism to ease our grief and to continue the Africentric educational paradigm my son had introduced, which earned him the 2002 teacher of the year award. Prior to and after that period, I worked with Ray on several political education projects.

In 2007, Ray’s personal story of survival against the medical odds garnered national attention. He spent over 360 days in Sinai St. Luke’s Medical Center attached to a Cardio West Total Artificial Heart machine while he waited patiently for a heart transplant. As each day ticked away, his odds of survival diminished. Jay Campbell, long time head of the local organ donor procurement program, told the gathering how his relationship with Ray grew during Ray’s emotionally draining medical sojourn. Ray ultimately received his new heart, but his journey didn’t end there. Several months after leaving the hospital, Ray called Jay to reveal his mother was dying. He wanted to donate her organs when the time came. The story didn’t end there, however.

Dominque’s mother told the audience how the young man refused to give up hope and his enthusiasm for life even as he learned two years ago that he was to follow in his father’s footsteps. Last year he was informed that his deteriorating condition had reached a critical stage. Though his condition threatened his life, Dominque never succumbed to depression. In fact, his most frequently announced complaints were about how his condition derailed his college studies, and his hopes for playing college basketball.

After months as a patient at Children’s Hospital (he was the oldest patient in the hospital and often brought laughter to younger patients), he was given the gift of life when a heart was made available. The story of his perserverance and dashed hopes to play college basketball reached the Milwaukee Bucks, and shortly after leaving the hospital, he was invited to a Bucks’ practice where he was given VIP treatment.

Dominique has since enrolled at Cardinal Stritch, is working out with plans to play for that college’s basketball team next fall. Sadly, his father won’t get an opportunity to see him play. He died of natural causes at the age of 47.

There are dozens of stories like Dominique’s, Joe Bartalotta’s and Bishop Hines’. Unfortunately, there are hundreds that don’t have such happy endings in part because the overwhelming majority of our people don’t understand that when ‘African Americans give, African Americans live.’ That’s the motto that new organ donation outreach marketing manager Alicia Moore is spreading throughout our community. Alicia was introduced at the luncheon, and there was unanimous agreement that she brings a deep-seated passion for her job. That may rest in part on the fact that she once dated Malik and was motivated by his donation. First on Alicia’s agenda is creating a Black network of volunteers, starting with the community leaders and clerics who attended the luncheon. From that core group she hopes to develop additional educational tentacles to reach into every segment of our community. It’s a Herculean job, but the rewards that come with success are greater than any I can think of---the gift of life. Hotep.

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