Justice Denied Again...
By Sukie Alexander Wachtendonk
It is with trembling hands and tears streaming onto my keyboard, that I regret to inform you, that a devastatingly final blow has been leveled in our three-year struggle, to secure DNA Micro-Array Genetic Testing for our son, Zak, who succumbed to his life-long Agent Orange disabilities in 2009. Zachary had celebrated his 30th Birthday one month before his sudden death.
At 11:58 pm on March 18 an ER Trauma Nurse at St. Mary's Hospital in Madison, called to state that the team was stopping resuscitation on our only son. Falling to my knees on our kitchen floor, I believe I screamed, "No, No, NO!" I must have fainted then, for when I came to, I was in the fetal position, and the telephone on the floor next to me was as dead as our precious and soulful son. I realized in that instant, as I pulled myself up that I now, must ascend the two flights of stairs of our 100-year-old farm house, to wake my husband of 37 years and tell him that our only son, our beloved and cherished Man-Child, was gone forever...ever so quietly and gently, telling him it was me, speaking his name, so as not to startle him in his ever present nightmares of war savagery and pain, reaching in the darkness for his hand and then his face, holding him in my love, trying in vain to somehow cushion the blow.
Thus beginning the newest version of our waking nightmare and its power to suck our very souls into the deep and endless abyss of Agent Orange torment and sorrow. "Zachary has died, Jimmy." "Another dream, Sukie, another bad dream, he uttered." "No, Honey, Please wake up. Zachary has died. We have to drive to the Hospital in Madison, now!" We held each other close for a scarce few moments, sobbing and shaking uncontrollably. Then, as quickly as he had jumped out of bed, Jim rushed downstairs to the kitchen telephone to call the ER where Zak was taken, following what we believe was a Grand Mal seizure due to pesticide exposure. He was dead on arrival. The ER Team halted resuscitation after almost an hour of attempting to get Zak's heart beating again.
"I must drive the 1.5 hours to Zachary immediately, Jim." Obviously in shock, still disbelieving the words of our boy's fate, he dials St. Mary's ER and the blow is leveled once again, as the ER doc explains. Now in hyper-vigilant mode, Jim dressed immediately, jumped into the van, and took the long drive no parent ever wishes to take, but must endure, to it's ultimately devastating conclusion — to identify your child's body.
Zak was the last of four difficult pregnancies, two Agent Orange miscarriages and two live births. Both of our children were born with multiple birth defects from Agent Orange. At the autopsy, they discovered that Zak had several more, very serious abnormalities that we were totally unaware of until his autopsy results were sent to us on the first anniversary of his death.
When Jim arrived at the ER in Madison, two of his brothers, Bill and John, were there waiting for him, as well as our friend Ron, to stand with him when I could not. Our 12-year-old granddaughter, Morgan, was asleep upstairs. The school bus would arrive at 7am. I couldn't wake our elderly neighbors at 12:35 am, to stay with Morgan, our adopted daughter, so I remained at home, cursing the heavens, wondering why I did not FEEL my son's passing. Immense and crushing sorrow, fear, confusion and dread had taken hold of me. I composed his obituary and sent out death notifications to friends and family, while waiting for Jim to return home.
I now must share this burden of Zachary's death with Morgan, who grew up with "Uncle Bear" as a constant and loving presence in her life, since she came to reside with us at 7-months-old. She adored him, and he adored her. Zak told me once that Morgan was the child he could never have. I must also find a way to tell our daughter Ree. I must tell my only surviving child, that her brother is dead, in a telephone call. She and her family are 3 hours away with no transportation. I also have to explain this horror to our 9-year-old grandson, Chuck, as well as son-in-law, Jason.
Jim, in Madison, had been alone with Zachary, had said his farewells and prayers for his safe journey into his next incarnation - as a whole, undamaged and carefree spirit, on a new adventure into the unknown. Blessing our son's coming and going, he closed Zachary's eyes, kissed him for me and once more for himself. He covered him, one last time, and walked away, as he knew he must.
Upon meeting with the Assistant Coroner at the Hospital, Jim informed him of Zachary's Agent Orange birth abnormalities and disabilities, his multiple chemical sensitivities, his seizures since birth, following pesticide exposures, where he consistently and chronically became a pulse-less non-breather, and needed to be revived by us, at least three times a month for most of his 30 years. Jim requested Pesticide Residue testing, which must be collected and analyzed within 24 hours of possible pesticide exposure, along with the usual drug analysis performed at autopsy. We suspected that the scenario of cascading symptoms, that were so prevalent through out his life, had occurred and we were not there at his apartment to help him. We were 65 miles away from Madison, unaware that this had occurred. And yet the guilt remains.
I did receive a phone call earlier that night, about 10:45 from Zak's roommate that Zak had a minor seizure incident, and the ambulance was taking him to a hospital. I asked if I needed to come to the hospital. He told me he didn't think so, but would call me when he got to the hospital. He never called back.
We now know that Zak was already dead at 10:45, that his roommate didn't call an ambulance for almost an hour, and then refused to move his trash from the hallway leading to Zak's room, so the EMTs and the Crash Cart could reach Zak in his bedroom at the end of the hall. The EMT report claims that he said he had better things to do! Two female EMT's had to drag our dying son, naked, on a tarp, down that fucking hallway, through the trashed apartment, to the landing outside the apartment door. That is where our son expired, on the landing of his 2nd story walk-up.
The waste of skin that was Zak's roommate, knew that Zak was dead when he called me, at 10:45 but didn't have the balls to tell me. Jim and I could have been there with Zak earlier that night. He is very fortunate that we actively practice principles of non-violence.
Unbeknownst to us, our son was then transferred to the VA Hospital in Madison for his autopsy. Zak was not a veteran. Jim and I were blindsided again. WHY was he taken to the VA we asked? WHY were we not told this before he was sent there? We would NEVER have allowed the VA to perform his autopsy, had we known, because of EXACTLY what has happened.
The VA Pathologist, who performed the autopsy, ruled that Zak's death was due to obesity, not a seizure death, though he states that that could be argued. Not heart failure, even though Zak's heart was found to be very small when he died. It wasn't the heterotopia of the brain, a rare condition in which brain cells normally on the interior of the brain, are clustered in groups on the outside of the brain tissue. His sudden death was not due to the finding, at the autopsy, that his cerebral cortex was severely malformed and sections of his brain tissue were missing. Did this finding indicate that Zak may have had cerebral palsy, AND muscular dystrophy, which twisted the bones his legs, atrophied his muscles, and rendered him unable to walk unaided until he was three? Is this why he was so severely limited in his range of motion, balance and mobility all of his life? Is this why he was legally blind, and neurologically impaired since his conception? All of these questions and no response to any of them.
Obesity is listed as cause of death and cannot be changed with out an expensive lawyer, a court order and a ton of money. We requested and received upon Zak's death, three "permanent holds" on Zak's remaining blood samples, and began the three-year search for a toxicology lab to perform the necessary pesticide residue tests that we were told could not be performed in the state of Wisconsin. I contacted Congressional Representatives, Zak's various doctors, genetics clinics and hospitals looking for some assistance in securing a lab and testing for Zak. The Coroner's office, to my knowledge, did not.
The EPA, after two years of haranguing, finally replied, via my Congressman. Not even they could undertake this testing that we have requested. The letter also stated that I should have had this testing done while my son was alive. Apparently, my paragraph regarding Zak's various health issues, and our repeated attempts to have the VA or his own physicians perform these needed tests were not read or were not considered relevant for thirty years. All requests were denied either by VA administrators, clinics and insurance companies. Even CHAMPVA to this day refuses to authorize any AO testing, diagnosis or blood analysis of Jim or our dependents.
Ree, Zak, Jim & Sukie Wachtendonk in 1981.
Almost four years have come and gone since Zak's death, and we continue the search for the answers and the meaningful assistance we need to survive out here in the world, as Agent Orange Families. There had been little movement on Zak's case until recently, when our grandson's physician at University of Wisconsin's Childrens Hospital became involved in Chuck's long-term care. Ironically, this is the same center we brought Ree and Zak, to for evaluation in 1979. Jim and I convinced the center to begin evaluations and offer clinical services to other AO Children and Families, at an accredited University Hospital in Madison, Wisconsin. We began sending vets and children there and it continued through 1981.
The program ended abruptly after Dow entered the scene to threaten and intimidate our physicians or anyone else in the scientific community who opposed the misrepresentation of the facts regarding their claims of safety for these products. The Agent Orange class action suit had just been filed in federal Court, and multi-nationals were on the offensive. They became an ever-present disruptive force n our lives thereafter, with disastrous results for veterans and their children. They were able to shut down the Research Lab and decades of work, by one of the foremost most experienced dioxin researchers at the time, Dr. James Allen, a tenured professor and Director of University of Wisconsin's Primate Research Lab in Madison. He made the discovery that dioxin is toxic and possibly lethal, in the environment at 2 ppt., much lower than EPA and Chemical Co. standards for acceptable exposure levels. We met at a state hearing on our first Agent Orange bill, in early 1980. I had openly testified regarding my AO research as well as my suspicions and concerns about the present and future dangers of domestic re-exposures to veterans and their children. Dow and Monsanto reps followed and openly attacked my credibility, my life experiences, my research, and my Agent Orange and VVAW work.
Then Professor James Allen stepped up and into the hearing box. He testified that he had documented in his experiments with Rhesus monkeys, the same birth abnormalities that I had described in my children. He went on to urge the committee to do all it could to address and remediate Veteran's Agent Orange health issues. Credibility, personified!
Unfortunately, this action set the multi-nationals to the task of destroying this man, and decades of his research. They attempted to obtain the results of his stated research before it was published. Victor Yaneconne (our Class Action Attorney), Professor Van Miller (also of the Research Lab), Jim and myself filed suit to defended Dr. Allen's invaluable research in federal court, and to keep them from acquisition of his research before publication and peer review.
We won that case, however, Dr. Allen's research study was shut down, along with the Waisman Center Project, when Dow threatened to cut ALL funding for research at the University of Wisconsin.
Fast forward to 2011. The Waisman Center (the Genetics Department of University of Wisconsin Hospital) began seeing our grandson, Chuck. Startling information regarding genetic deletions was found in his DNA micro-array. He is missing genetic material. This was our goal in 1978, to have these studies performed for all AO descendants. Now it was possible to discover and confirm through genome technology what we had suspected and reported for years, that Dioxin-based substances have the ability to alter human DNA.
We made the request through our geneticist to have a micro array performed on Zak's DNA, since we could not find a lab to do the Pesticide Residue testing. His remaining samples would be used to determine if he had the same deletions of genetic material. Late in 2011, I spoke with the Assistant Coroner, asking if any lab was found. I was curtly informed that Zak's autopsy samples would not be held after December 2012. In an attempt to save Zak's samples from destruction, I sent out letters asking for help in stopping the destruction of evidence, which we consider these autopsy samples to be. Several replies arrived. They would destroy the samples.
Then we privately raised the considerable funds, thanks to VVAW friends and family. I made arrangements for Genetics Clinic personnel to pick up Zak's samples from the Coroner's Office, to begin the DNA Micro Array Analysis. Three weeks ago, our hopes were once again dashed, when the Genetics Department informed me that "Zachary's Autopsy Samples were NOT Properly Preserved," for DNA Micro Analysis. The only remaining samples of our son are useless for technical analysis.
The BIG question remains: WHO DID NOT PRESERVE THEM CORRECTLY? The VA Pathologist, performing the Autopsy? The Coroner's Office? No one is responding.
If any one has contacts to Civil Rights or Constitutional Attorneys who may be interested in assisting us pro bono, we would welcome any assistance to gain justice for Zachary and other Agent Orange children and grandchildren. Please Contact: firstname.lastname@example.org.
Sukie Wachtendonk is a long-time VVAW member and Agent Orange activist from Wisconsin.