This past winter, Karlene Hart contacted MHAUS to co-sponsor this life-saving reunion in the form of an MH patient mini-conference. She supplied MHAUS with a list of blood relatives and also personally sent out letters to 150 family members. MHAUS supplemented her list with its database of MH-susceptible families in the region.
The MH mini-conference was held on Saturday, June 17, 1995 at Saint Joseph Hospital in Elgin, Illinois. Sundar Cherala, MD, Saint Joseph Hospital hosted the event. MHAUS Board Member Nancy Brant, RN, Danbury Hospital in Connecticut welcomed over 60 people including MH-susceptible family members from Illinois and Indiana and nurses from St. Joseph Hospital.
National experts in MH gave overviews of the latest medical and scientific information: Steven C. Hall, MD, Children's Memorial Hospital in Chicago presented the clinical issues of MH; Cynthia A. Wong, MD, Northwestern University Medical School in Chicago covered the current status of testing for MH-susceptibility, and Jeffrey Fletcher, PhD, Medical College of Pennsylvania and Hahnemann University Hospital in Philadelphia reviewed current MH research. A lively luncheon and question and answer session gave everyone time to meet each other and share information.
Karlene and other members of her family are MH-susceptible. They learned of their probability of being MH-susceptible after MH struck their grandmother and mother during the induction of general anesthesia in the operating room. Her grandmother died at the age of 45 from an MH episode. Her mother, Pauline Brown, suffered acute cardiac failure and massive brain damage at the age of 33 from an MH episode.
Karlene explains, "In 1950, just 12 minutes after the induction of general anesthesia in the operating room, my maternal grandmother died. In 1961, MH struck my mom during an operation. At the time, she was a vibrant nurse and mother of 5 young children ages 5-8. My mom lost her speech and much of her large and small muscle control. It has been painful and difficult for the entire family."
Through her membership in MHAUS and medical training, Karlene learned more about MH. In 1988, her daughter Erin and son Chad were scheduled to have tonsillectomies. During the pre-anesthesia survey, Karlene told the anesthesiologist about her mother and grandmother. The anesthesiologist decided to postpone the tonsillectomies and suggested that Karlene and her three children get tested to determine if they were MH-susceptible. They underwent MH muscle biopsy tests. Karlene, Erin and Chad tested positive. Her oldest son, Todd, tested negative.
Karlene discusses, "After I learned that Chad and Erin were MH-susceptible, I held off on their tonsillectomies because I was afraid to have them undergo general anesthesia. Between 1988 and 1994, Erin had severe bouts of strep throat and missed a lot of school."
Erin a 17 year-old high school student comments, "I finally told my mom that I was tired of being sick and that she had to find me a surgeon and anesthesiologist who knew how to handle MH."
"I felt comfortable choosing Dr. Bhatt,an ENT and Dr. Cherala, an anesthesiologist," Karlene continues, "to perform Erin's surgery. They thoroughly explained everything to us and conducted mock MH trials prior to the operation. During the surgery, they used non-triggering agents and successfully avoided an MH episode."
Prior to the MH patient mini-conference, Karlene and her second cousin Paul Swearingen started working on a family tree using a computer program called Family Tree Maker on CD-ROM. Their research, culled from the vital records departments of County Clerks and medical departments, spans seven generations back to Germany on the Polish border. The information includes certificates of birth, marriage and death, as well as medical records. Karlene reports, "We have calculated that presently over 400 family members can be MH-susceptible."
Karlene and Vicky held a traditional family reunion at Vicky's house following the MH mini-conference. They passed around their family tree and family scrapbook during their reunion, reminisced about old times and discussed the MH mini-conference.
Vicky recalls, "The MH mini-conference was enlightening. Everyone at the reunion was thrilled and thankful that MHAUS worked closely with us to put it together. All the doctors delivered excellent presentations that were easy for patients to understand. Prior to the event, many of our relatives seemed to think that an MH episode couldn't happen to them. After the mini-conference, our relatives took MH more seriously. In fact, my dad (a father of 7), and aunt (a mother of 9), quickly scheduled their muscle biopsy tests after they heard the presentations." Luckily, they both tested negative; therefore their offspring are not MH-susceptible.
Karlene adds, "This event got our family together to enjoy each other and to learn how to take more control of their lives. We have pledged to get together for an annual family reunion. I feel that we are all better informed about MH and can act as resources to other family members that could not attend. I highly recommend that other MH-susceptible families around the country hold similar events to help their families better understand MH." She concludes, "Our life-saving family reunion has made a positive lasting difference in our lives."
The Elgin "family reunion" was the subject of a feature story that ran on the news wire and national pages of the Chicago Tribune July 4, 1995. As a result of the publicity, Josephine (Jo) Nichols, MHAUS Administrator has received 15 calls from people living in Illinois, West Virginia, Pennsylvania and Florida. Jo was surprised to learn that three of the callers had recently experienced MH episodes and had no awareness of MHAUS until they read the article. The callers were relieved to learn that MHAUS exists as an expert resource and support to patients and the medical community.