Vermont mother's personal story makes case for increased research funding

     WASHINGTON, May 9, 2001  -  An Underhill, Vt. woman shares her experience as a mother of a child with a complex congenital heart defect with a Senate committee Thursday to explain how her family has personally benefited from advances in medical research and technology.  She will encourage committee members to support initiatives that will help continue the innovations in medical technology and research that are so critical in saving and improving the lives of the 61 million Americans with cardiovascular diseases.

     Julianne Nickerson, mother of seven-year-old James, will testify before of the Senate Health, Education, Labor, and Pensions Committee, Chaired by U.S. Sen. Jim Jeffords, R - Vt., on behalf of the American Heart Association at a hearing on medical innovation.  She will tell the committee of her son's struggle with Hypoplastic Left Heart Syndrome, a complex congenital heat defect in which the left side of the heart is underdeveloped, and described how advances in medical research and technology helped her son.

     "Two days after James' birth, his condition was discovered.  Our dreams and expectations of parenthood changed quickly," said Nickerson.  "We were given three choices of what to do following his diagnosis.  One, do nothing, and he would die; two, wait for an infant heart to become available for a transplant; or three, agree to a three-stage surgery to take place within the first several years of  James' life. "

     The Nickerson's chose the surgery option and, after a complication, the third stage of the surgery was completed.  At this time, James is doing well, according to Nickerson.  However, his future is uncertain. She credits advances in medical technology and research in helping her son survive this far.  "If James had been born ten years earlier, he would not be here today," she told the committee.  "Because of the support that goes into research and technology advances, he is still a part of our family."

     To help the 61 million Americans suffering from heart disease, stroke and other cardiovascular diseases - including the 40,000 children born each year with congenital heart defects -  the American Heart Association supports an FY 2002 appropriation of $23.7 billion for the National Institutes of Health - a 16.5 percent increase over the  current level - which is the fourth installment in doubling the NIH budget by FY 2003.  Nickerson urged the committee members to continue along this path.

     "Thanks to medical research, many of our children born with congenital heart defects are growing up and becoming adults," said Nickerson.  "A whole new field is opening up.  We need to take care of these young adults and continue to support physicians and researchers who are pursuing this field.  I want to be sure that James and his friends with congenital heart defects have the support they need to live full and productive lives."

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