The Ultimate Gift

By Weber, Karen Shaw | The Exceptional Parent, August 1998 | Go to article overview

The Ultimate Gift

Weber, Karen Shaw, The Exceptional Parent

Research on brain tissue has uncovered important information on developmental disorders and disabilities. This article examines the advancements made by researchers because of donations to the Brain and Tissue Banks for Developmental Disorders, as well as the preparation involved when a family makes the decision to donate organs.

Sally Wisniewski did not think twice about driving an hour away in the middle of the night to a hospital to collect an unusual package--the brain tissue of a child with Rett syndrome who had just died. Ms. Wisniewski is the project coordinator of the Baltimore branch of the Brain and Tissue Banks for Developmental Disorders.

With the donation of that single brain, researchers have gained valuable insight into Rett syndrome, a neurological disease found only in girls. Girls with this disability develop severe dementia and autistic-like behavior as well as losing purposeful movement in the hands.

The tissue came from a three-year-old girl. At that age, the disorder was still in its active, destructive stage, something researchers had never had an opportunity to study. Tissue from her brain was distributed to researchers around the country, including Drs. Hugo W. Moser and Sakkubai Naidu of the Kennedy-Krieger Institute in Baltimore.

Dr. Naidu recently reported findings that point to the possibility of diagnosing and treating Rett syndrome before it begins its characteristic destruction of the brain. He found that the brain cells in a child with Rett are formed normally, but the projections from the brain cells that carry messages between cells are malformed and there are not enough of them. Based on these findings, Dr. Naidu believes that further research may reveal an abnormality in the chemical system responsible for transmitting signals from one cell to the next. If this hypothesis proves true, there are medications that could be used to treat Rett syndrome if the diagnosis is made early enough. Researchers are now searching for the genetic abnormality that causes the syndrome. That discovery would increase the potential for early diagnosis and treatment. Dr. Naidu's research, and the ongoing research into Rett at other centers, has been made possible because families had the vision and commitment to donate tissue from their children as a legacy to the future.

A highly personal decision

Linda Brehmer first read about tissue donation in a newsletter from a parent support group. She and her husband are registered organ donors, but they had not realized that Ivy, their daughter who was terminally ill with a developmental disorder called Hurler's syndrome, would also be eligible to be a donor. Reading about the Brain and Tissue Bank's program that would allow Ivy's tissue to be used for research on Hurler's syndrome to help other affected children, Linda felt empowered. "It's such an honor to donate an organ if you can, to have that opportunity to give life, especially if your own child is dying. It's something you can do when there isn't anything you can do for a terminal child."

The Brehmer family discussed the program before calling the Bank. Linda then talked to Sally Wisniewski several times, going over all the aspects of tissue donation and the program's policies with them before sending out: the paperwork. "Sally wanted to be sure that we clearly understood what would happen. She also wanted to be sure that we knew that we could change our minds at any time, even after Ivy died. It's reassuring to know that they care so much," says Linda.

When Ivy died at home, the attending nurse and physician again reviewed the Brehmer's right to change their decision about donation. The Brehmers called ahead to the hospital before taking Ivy's body for the tissue recovery. The pathologist, who was waiting for them, let the Brehmers have as long as they needed to say goodbye. Then they went home. After several hours, they picked up Ivy's body and brought it home for the funeral. …

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