It is a delicate dance, a struggle to find the right words to console grieving parents while also asking for permission to harvest their dead child's organs.
The physicians and scientists at Children's Hospital of Orange County do their best to gently explain that the only way to find a cure or prevent childhood disorders ranging from autism to cerebral palsy is to dissect and research brain and organ tissue from young sufferers.
"We are not only trying to help diagnose but to use tissue to better understand the disorders," said Dr. Stuart Stein, founder and director of neurology at the hospital's nonprofit Brain and Tissue Bank for Developmental Disorders.
The center collects and disseminates brain and organ tissue from young patients to researchers and universities throughout the world. One of only three such organ banks in the nation and the only one of its kind on the West Coast, the 2-year-old clinic based in Orange focuses on disorders that attack the brain and spinal cords of youngsters, officials said.
The clinic recently petitioned the National Institutes of Health to renew its funding. It shares a $1-million federal grant with the nation's two other brain and tissue banks in Maryland and Miami.
Its work is recognized as helping to lead the way to curing fatal childhood diseases, said Dr. Edward McCabe, physician in chief at UCLA Children's Hospital. He said the Orange County brain bank has been an invaluable resource as research focuses on genes and irregularities in DNA makeup that are believed to cause mental retardation.
Through the brain bank, the UCLA researchers are collaborating with doctors and scientists in South Carolina and Miami. They hope to isolate the affected genes to improve diagnoses and eventually create a drug or gene therapy to prevent or reduce the chances of mental retardation at birth.
"The [Orange County] brain bank has been a real facilitator, letting us go the next step," McCabe said. "They are a national resource."
The work of the brain banks in Miami, at the University of Maryland and in Orange County also is credited with advancing research into still mysterious diseases such as adrenoleukodystrophy, or ALD, a genetic disorder that attacks the brain and spinal cord and was the focus of the 1992 movie "Lorenzo's Oil."
About 3% of children born in the United States have mental disorders at birth or eventually develop an abnormality, said Dr. Felix de la Cruz, founder of the Miami and Maryland brain banks and chief of the mental retardation and development disabilities branch of the National Institute of Child Health and Human Development, a branch of the NIH.
Many of the disorders systematically destroy the brain over time. Sometimes, such as in instances of ALD, babies are born without any apparent problems. Then they begin disintegrating, losing the ability to talk and walk. Many eventually die.
"At this point, we have no real treatment," Stein said. "You can't make the brain regrow."
It wasn't long ago that scientists shied away from researching mental retardation, saying the brain is too complex to decipher, McCabe said. It also was difficult to find patients to examine and study.
Mental retardation and other disorders were considered embarrassing secrets that most families wanted to hide, doctors said.
"The children were dumped in institutions with very little care or opportunity for improvement," de la Cruz said. Added McCabe: "Families kept it a secret, [so] it was difficult to even do family studies."
Society's acceptance of mental disorders has allowed doctors and researchers in recent years to probe deeper into the causes of these conditions.
"Now, it's open and addressed," de la Cruz said.
For years, officials at the National Institutes of Health wanted to open a brain bank on the West Coast. But they were unable to find an appropriate research facility, de la Cruz said.
"In many of the research site visits I made, scientists bemoaned the lack of central repositories for brain and other tissues they could use," he said.
Then officials at Children's Hospital recruited Stein, whose specialties are fetal brain development and metabolic disorders, with the goal of establishing the facility as one of the key children's neurological research and clinical centers in the nation.
That is when the West Coast brain bank became a reality, and a resource for the entire region, de la Cruz said.
"You have lots of hospitals that take care of children in California, but there are only six children's hospitals in the state," said Dr. Maria Minon, vice president of medical affairs for CHOC. "The Brain and Tissue Bank not only increases our quality, it gives us the ability to be at the forefront."
The local tissue bank has harvested hundreds of organs, a majority coming from biopsies of live patients and the rest from cadavers.
"The response from the scientific communities has been very positive," de la Cruz said. "They have told us that without the Brain and Tissue Banks, a lot of research could not be carried out."
The work can be difficult, as organs often are gathered amid tragic circumstances.
"They are slow, painful and awful deaths to watch," clinic coordinator Philip Schwartz said.
But researchers, scientists and even the parents of the victims find something life affirming in it all.
"Most of the parents we approach are grateful for the opportunity to give some meaning to the pain their child has suffered," Schwartz said.