By Teresa Conrick
On May 31st, it was discovered that the federally funded Harvard Brain Tissue Resource had a problem. A freezer containing one-third of the brains of those who had an autism diagnosis was thawed. Fifty-four brains were now decomposing yet how this happened remains a mystery. Dr. Martha Herbert, MD, PhD, assistant professor of neurology at Harvard Medical School and a pediatric neurologist at Massachusetts General Hospital has also done brain research using brains of those diagnosed with autism. Dr. Herbert was contacted and reported back to us that this was not her lab.
We are reading all over the internet: "The freezer failure came despite two alarm systems that are designed to alert security and staff should there be a malfunction. Both alarm systems are connected to separate circuits, and the room containing the freezer is monitored around the clock, the hospital said. Twice a day temperature gauges on each freezer are inspected. Each freezer was reading normally, at minus 79 degrees centigrade. It was only when the door was opened that it became evident that the freezer had malfunctioned. Freezer failures are not uncommon in research, but for a freezer and two alarm systems to fail simultaneously is perplexing."
Yes, perplexing and heartbreaking as also in May and also recently in the news, a very young boy with an Autism diagnosis tragically died. We learned that Alexi LePoer, like so many children with an autism diagnosis, snuck out of his home and was later found at the bottom of a nearby pool. It happens over and over, the siren call of the lake, pool, pond to the young child and then the last breath of life. It is a nightmare that is increasing right along with the epidemic numbers of children being diagnosed with Autism. The LePoer family described their feelings and thoughts regarding their tragic loss. These wonderful and generous parents decided that donating their son's organs could help others, especially his brain. Alexi was severely impaired and had just started to use a few words and his regression into an Autism diagnosis is all too familiar:
"Like many children later diagnosed with autism, Alexei hit normal developmental benchmarks at first, making his later descent that much harder on the couple. There was no family history of neurological disorders, and the couple thought they were doing everything right.
But then Alexei started mumbling, getting so frustrated when he couldn’t be understood that he would bang his head until being secured in a highchair for safety. The child who had earlier joyously clapped along to “Happy Birthday’’ was soon putting his hands over his ears and crying when the same song came on. And he would jump non-stop."
Alexi's father did what so many of us have done -- he went looking for the clues:
"LePoer took time off from work, throwing himself into autism blogs, websites and research papers as a way to cope — even if it became something of an obsession.
“If some stranger came into your house and hurt your child, you’d want to know why,” LePoer said. “It needs to be understood. It needs to be stopped.”
Hoping to find more answers, The LePoer family enlisted in a research study:
"The family soon enrolled in a study of the disorder focused on younger siblings, a project overseen in part by Dr. Margaret Bauman at the Lurie Center for Autism in Lexington, formerly known as Ladders and jointly run by Spaulding Rehabilitation Hospital, McLean Hospital, Massachusetts General Hospital and its children’s campus.
In the second version of their Department of Defense-funded study, Bauman and her team are collecting placentas and amniotic fluid at birth, as well as urine, stools, blood, breast milk, saliva, hair and fingernails at regular intervals later. They also measure brain electrical activity and record their subjects’ play breaks, social interactions and motor skills."
Little did the LePoer's know that a soon to happen tragedy would extend that research right into their son's actual brain:
"Around 2 a.m. the night of his son’s drowning, he approached his wife after looking up the information again online. Pathologists and medical examiners typically have to preserve donated brains on ice or in coolers within 24 hours of death, preferably less.
“I didn’t know what to think,” Ivana LePoer said. “I knew it was for a good purpose but it was hard to take in.”
With his wife’s consent, LePoer contacted the Harvard Brain Tissue Resource Center, better known as the “Brainbank” and housed at McLean Hospital in Belmont. The couple designated their donation for the Autism Research Foundation, also run by Bauman of the sibling study.....Alexei’s brain is the youngest the foundation has ever received, providing an even earlier window into autism. It comes with a wealth of valuable clinical data."
"LePoer and his wife believe vaccines played a role in Alexei developing autism, a theory scientists have disproven but that still tantalizes many parents.
Instead, Bauman thinks the disorder is likely genetic and influenced by environmental factors — encountered either in the womb or after birth. One colleague recently told her there could be 100 total genes at play, with each child possibly influenced by a smaller, individualized bundle."
The use of the lost brains described here has such historical importance:
"The damage to these brains could slow autism research by a decade as the collection is restored, said Carlos Pardo, a neuropathologist and associate professor of neurology at Johns Hopkins University.
The collection, owned by the advocacy and research organization Autism Speaks, “yields very, very important information that allows us to have a better understanding of what autism is, as well as the contribution of environmental and immune factors,’’ said Pardo, whose 2004 study of brains stored in the bank was the first to find that autism involves the immune system. “The benefit has been great.’’
The hospital is investigating whether the brains might still hold value for genetic research, and initial indications are positive.
It seems disturbing that GENES are still being glorified as the answer to Autism's increases. We see daily in the news and in research how the IMMUNE SYSTEM is involved with the BRAIN. Since vaccination is the hand of science and not nature, manipulating the immune system, it is not an unreasonable idea, yet it still remains controversial.
With all that has happened at the Harvard Brain Tissue Resource Center, it is unknown if Alexi's brain is one that has been lost to "freezer failure." It would be a double tragedy given that for the LePore's, donating his brain gave them a sense that they could still help in the research of what happened not only to their child, but to so many others:
"LePoer knows a single donation is unlikely to lead to a major breakthrough, but says, “To know he’s helping is what keeps me going.”
Through their donation, the family will receive a report on what researchers discover about Alexei’s brain"
Will this family ever receive a report on what was truly discovered? Has the truth about Autism and specific damage to brains showing immune system injury become so horrific that some would tamper with evidence?
"Benes said the situation is so unusual - the perfect storm of alarm and thermostat failure and the concentration of samples - that she cannot rule out foul play . She said she has not spoken to law enforcement officials, pending the completion of the internal investigation.
In the interim, she said, McLean will upgrade security in the freezer room, which is under lock and key and watched by a surveillance camera."
"The donated brain of a 4-year-old Westborough drowning victim stored at the Harvard “Brainbank” was not among those that thawed — and were damaged — after a freezer and alarm failure, the facility has said. When he received the call from the Brainbank, his heart initially sank, Christopher LePoer said — lightened a little once he found out his son’s brain had not been damaged further and could still help with research.
“It’s kind of a mixed bag,” he said, referring to the larger setback. “I’m just grateful he’ll be able to continue to help in this horrible situation.”
The head of the Autism Research Foundation, Dr. Margaret Bauman, expressed relief by email that their donation was not harmed but was not available for further comment.
Teresa Conrick is a Contributing Editor to Age of Autism.