By Deb Silverthorn
As a young girl, Jamie Schanbaum twirled and trained at Sarasue’s Academy of Dance for 10 years. As a young woman, just 21 years old, Jamie, a sophomore at UT Austin and a survivor of meningitis, spends her days studying and still training, along with three hours of physical therapy — all with great determination, strength of character and belief in herself. “I never thought I’d be here but I am, and there’s nothing I won’t be able to do.”
Last Nov. 12, Jamie spent the night at a friend’s home, waking up feeling achy and worn, each step on the tile colder to her touch than the one before. “I was freezing and nauseous, and I couldn’t figure out what was wrong,” she said. “At 7 in the morning I went home and I couldn’t keep anything down. The pain and heaviness in my feet soon moved to my hands and I didn’t know what was wrong but I knew it wasn’t good. I called my sister and by the time we got to the hospital, I couldn’t stand and I was brought in on a wheelchair.”
Jamie, who had not received the Manactra/MCV4 meningitis vaccine (recommended by the CDC to all children after age 11), was diagnosed with meningococcemia, a deadly infection of the blood. The disease is caused by bacteria entering the cerebrospinal fluid that surrounds the brain, which irritates the meninges, the membranes that line the brain and spinal cord.
“I remember lying there and my legs turned black. My legs, then my hands, knees and elbows. They were black,” Jamie said. Hers was the second confirmed case of the disease on the university’s campus last fall. The first student, according to University Health Services’ Sherry Bell, recovered completely.
“It never occurred to me I wouldn’t be well and home soon. I had no idea that seven months in hospitals, more than 50 ‘dives’ in a hyperbaric chamber — which saved my life — at least 15 surgeries, skin grafts and more were in my immediate future,” Jamie added. “All because I missed out on the vaccine. People HAVE to get the vaccine. I don’t want anyone else going through this.”
After three weeks in the Seton Medical Center Intensive Care Unit, Jamie was transferred to Houston’s St. Joseph’s Hospital. On Feb. 6, Jamie had surgery to amputate both of her legs below her knees, and to remove most of her digits on her hands, although fortunately, parts of both of her thumbs and two of her fingers remain. In May, she was transferred to St. David’s Hospital Rehabilitation Unit, where she remained for three weeks. There, she was fitted for, and learned to use, her prosthetic legs.
Jamie’s family — including her father, the late Robert Schanbaum; her mother, Patsy; brother Nicholas, a Dallas attorney who commutes to and from Austin to help his sister; and sisters KC, a student, and Roni, a graphic designer — are former Dallas residents and members of Temple Shalom. They have been by her side, every step of the way.
“There is nothing that says Jamie can’t do whatever she wants to. It may be more difficult but she’ll do it,” Patsy said. Together, the family has become involved in the National Meningitis Association and that organization’s Moms on Meningitis group. In April, their efforts with State Senator Wendy Davis and State Senator Eddie Lucio, Jr., paid off with the naming of the Jamie Schanbaum Act. It requires, as of Jan. 1, 2010, bacterial meningitis vaccinations for first-time college students living on campuses in Texas. Exceptions are made for students opting out for medical or religious reasons or “reasons of conscience.” “This was, I believe, the third time such a bill has been brought up but I was told that it was our testimony that pushed it through,” said Patsy, who testified with her son Nick while Jamie was still hospitalized.
“Patsy, who is originally from my area, came to me for help, and how could we not help?” said Senator Lucio, who has made children’s health issues a staple of his public service. “I went to visit Jamie in the hospital and it tore up my heart. We had to do something. Last week, I’m happy to say, I saw Jamie again and she had a broad smile as she walked in; she’s in school, she has the heart of a lion and she’s an example of ‘can do’ and ‘will do.’ I have so much respect for her.”
The senator added, “The Jamie Schanbaum Act will save lives, period. There are 2,000 to 3,000 cases of meningitis in this country each year and I believe 10 [percent] to 12 percent of those patients die. There’s no need for [that] and if we get the word out, and we inform people, it won’t happen.”
“This semester, it was required of students to read material about the disease, the vaccine, the risks, and then to click that they’ve read those materials. We hope that they have and we hope we are educating our students,” said UT Austin’s Sherry Bell. “As of January 2010, all incoming, on-campus residential students will be required to show proof that they’ve had the vaccine at least 10 days prior to taking residency.”
Separate and apart from the Jamie Schanbaum Act, but pertinent to the family’s goal, as of Oct. 1, all seventh-grade students in Texas must have had a meningococcal vaccine and a second dose of varicella (chicken pox survivors excluded). Depending on their shot records, students in grade seven or higher must show proof of receiving a Tdap booster, which protects against tetanus, diphtheria and pertussis (whooping cough). There are exceptions for medical or religious beliefs. In addition, kindergartners entering Texas public schools must have had two doses of Hepatitis A, two doses of varicella (unless they’ve already had the chicken pox) and two doses of the vaccine that guards against measles, mumps and rubella.
“Awareness is the key,” Patsy said. “Awareness for students and their parents, for physicians, and for the mainstream population. Adults need this vaccine, children younger than 11 need this vaccine. If you need this to leave the country, and you do, why wouldn’t we need it to be at home?”
“Jamie’s courage throughout this fight cannot be understated. She gritted her teeth and faced this challenge head-on, but there is a huge difference between Jamie recovering from this devastating illness and not having to have faced it at all,” her brother Nicholas wrote as part of the blog which keeps the Schanbaums’ friends, family and supporters updated on her condition. “Our efforts on Jamie’s behalf are intended to help others avoid the pain and trauma that Jamie has had to experience. Jamie will battle the effects of this disease for the rest of her life and it is important to her that she is able to show her friends, family and those around her that this dreadful situation could have been avoided.”
In addition to getting the word out, raising funds to support Jamie’s medical expenses is at the top of the schedule. Jamie’s Dallas school, Shelton, raised funds earlier this year with a “Jean Day.” An event will be held, with a suggested donation of $20, on Saturday, Nov. 7, at the Liar’s Den at 2710 McKinney in Dallas, from noon to 6 p.m. A second event, an evening gala at Jamie’s alma mater, St. Michael’s Academy in Austin, will take place on Feb. 27.
“Jamie is strong like an ox and I’m so proud of her. We just don’t want anyone else’s kids to have to undergo what she is [going through]. Get the word out, get your kids the vaccine, keep your kids healthy,” said Jamie’s “Poppa,” Dallas’ Gene Schanbaum. “She’s believed in herself and believed she’d overcome this — and she will.”
“This easily could have been avoided but I am standing. I will drive, I will live alone again, I am tying my shoes, dialing my iPhone, e-mailing my friends and getting through school,” Jamie said. ”Humans adapt. It’s crazy but we have to, we can and we do.”
Donations to help support Jamie Schanbaum’s medical expenses can be mailed to P.O. Box 4396, Austin, TX 78765 or online at jamieschanbaumupdatesandsupport.blogspot.com. For more information on the Nov. 7 fundraiser at the Liar’s Den, or the Feb. 27 event at St. Michael’s Academy in Austin, call 214-226-8090.
THE DOCTORS ARE IN
By Shelley Weiss, M.D., and Simma Weiss, M.D.
Meningococcal vaccine can save your child’s life
“People are a lot more fragile than they think,” says K.C. Schanbaum, older sister of Jamie Schanbaum, who survived a battle with meningococcal meningitis this past winter. This realization surfaces in our consciousness — whether through the High Holy Days prayers, a newspaper story or the sudden illness of someone close to us. While we cannot predict or stop every possible risk to our lives, we can work hard to prevent as many as we can.
We often think of vaccines as a rite of childhood, designed to prevent such “childhood illnesses” as measles, chicken pox and whooping cough. Vaccines, however, represent an important part of our preventive health strategy throughout adolescence and adulthood.
Spinal meningitis is an inflammation of the fluids surrounding the brain and spinal cord. It can be caused by a variety of organisms, but one of the most severe forms is caused by a bacterium known as meningococcus. The illness begins with flu-like symptoms, but can quickly progress to neck pain, rash, loss of consciousness and sepsis (drop in blood pressure leading to organ damage throughout the body). Death occurs in about 10 percent to 15 percent of those infected. Long-term effects — including loss of limbs, hearing loss and mental retardation — occur in 10 percent to 20 percent of survivors. Meningococcal disease occurs in 1,400–2,800 people per year in the United States, killing about 300 people per year in this country.
Because of the close contacts associated with the dormitory lifestyle, college freshmen are at higher risk than the general population for infection with meningococcus. Four years ago, the FDA licensed an updated vaccine for meningococcus called MCV4 (Menactra). This vaccine confers long-lasting immunity against this infection with a single dose. The CDC and the ACIP recommend routine immunization of all children with MCV4, at 11 or 12 years old. This vaccination helps to protect against the risk of meningococcal disease in high school and college.
The meningococcal vaccine, along with the pertussis-preventing tetanus shot (TdaP) and the Human Papillomavirus Vaccine for girls (HPV or Guardasil), can be provided by your pediatrician or family physician at your child’s 11- or 12-year-old physical.
Let us use the story of Jamie Schanbaum to remind ourselves of the importance of adolescent and adult vaccination in all our lives.
Shelley Weiss, M.D., is a pediatrician and Simma Weiss, M.D., is a family physician at Healthy Texan Pediatrics and Family Medicine in Medical City Hospital. This article does not constitute formal medical advice. Specific questions about your or your child’s health should be addressed to your personal physician. Appointments with either Dr. Weiss may be made by calling Healthy Texan Pediatrics and Family Medicine at 972-566-4286.