AUSTIN (KXAN) — It’s called the 100 day cough, a violent hacking sound that lingers for weeks if not more.
“When you have whooping cough, you cough all of your air out and you can’t breathe back in. That’s the super scary feeling that you can’t breathe back in at all,” Rodney Throgmorten explains.
In 2003 he contracted Pertussis, also called whooping cough, and unknowingly passed it along to his 4-week-old infant daughter Haleigh.
“I remember the first time when she did cough and I remember thinking, ‘That’s not normal for an infant – for a baby,’” Haleigh’s mother Jerri Lynn said.
Two weeks later, Haleigh died of pertussis.
“All good parents would gladly, willingly and without thought give their own life for their kid’s and that child being their most prized thing in the world so if anybody were to pass on a deadly disease to their child, that would probably lead to a lot of regret and blame for the rest of their lives. I have felt so comforted that my wife didn’t blame me at all, I know that she got it from me,” Rodney said.
Privacy vs. Public Health
In April, Rodney drove 500 miles to Austin for a hearing at the State Capitol to discuss ImmTrac, the state’s shot registry. It allows the Texas Department of State Health Services to store your vaccination records electronically. ImmTrac is an opt in registry, Texans have to sign up for it.
Doctors, public health departments, schools and other authorized professionals can access that immunization history to ensure important vaccines are not missed.
Testifying at the hearing, state officials told lawmakers there are immunization records for 7 million children and 270,000 adults in the registry, that’s an opt in rate of 92.8 percent at birth.
Members of the Immunization partnership made up of doctors and advocates like Nidha Nakra say the registry needs to be more efficient and want lawmakers to change it to an opt out system.
“Changing the registration process from an opt in to an opt out process will ensure we have just a more robust immunization registry,” Nakra said. An opt out process would mean all shot records would become part of the registry without Texans having to sign up for it or they can opt out.
“I think there was a lot of concern between the rights of the individual versus the right of the society, I think they co-exist but I do think our goal is to protect the rights of the babies, that is the highest goal,” Dr. Stanley Spinner, the Chief Medical Officer at the Texas Children’s Pediatrics in Houston, said at the hearing.
Rebecca Rex has no intention of sharing her family’s health records with the State of Texas. She’s been fighting the idea of an opt out registry since 1997 when lawmakers first approved ImmTrac.
“It is a question of privacy. We have families in this state who make choices other than to follow the standard schedule, the primary point of the registry is to enforce the standard schedule and I believe parents should be allowed to make informed choices about the healthcare of their children,” says Rex adding “Public health is throw out there for many things including heavy handed government.”
Texas is not immune
The most complete statistics health officials have are from 2012. “…that year we had 255 deaths in the United States of Pertussis. When you look at that, about 211 of those were children less than 3 months — so children that were not immunized,” says Dr. Eric Higginbotthom of Dell Children’s Hospital in East Austin. He sees one to three cases of whooping cough a week.
KXAN requested the number of state-wide pertussis and measles cases from the Texas Department of Health. In 2013, there were 3,987 pertussis cases in Texas. Travis County reported 311 pertussis cases last year. The latest 2014 figures show 50 pertussis cases in Travis County and one infant death from the disease, the first in Travis County since 2003.
“We’re looking for a better means of controlling and maintaining those outbreaks,” says Nakra. She points to a measles outbreak in Tarrant County last year where 21 cases were linked to a mega church. Nidha says a more robust ImmTrac would have better controlled the outbreak.
“In cases of the measles outbreak in Tarrant County, not every individual was in the registry so the public health department had to go through the records manually or call individuals on the phone to determine their vaccination status. That takes a lot of time and when that happens the outbreak could be spreading,” she explained.
Too Young to be immunized
Haleigh would have been 10-years-old today and in 5th grade in her hometown of Panhandle, Texas near Amarillo. She was taken away from her family as quickly as she was born.
“She was born in her own bedroom and I got to deliver her, cut the cord,” Rodney said. He remembers that day well “Delivering my daughter like that, it was so wild and crazy and everybody yelling. It was the greatest thing of my life. I can’t think of anything that would come close to it. I got to get her to take her first breath and I got to be the first face she saw and stuff.”
A few weeks after she was born, Haleigh couldn’t even catch her breath, coughing until she was blue in the face. She was too young to be immunized from the disease. Babies can’t get their first dose of the Pertussis vaccine until they are 2 months old. Haleigh lived only six weeks, Rodney lives to tell her story, “I just wanted to do anything I could to raise awareness about Pertussis in particular but about all of the vaccine-preventable diseases that are making comebacks all over the country.”