Advocating for childbirth safety

The delivery, however, was anything but calm. During a long and difficult labor, her daughter’s shoulder got stuck behind her pelvic bone, which resulted in her daughter Eva’s left arm being paralyzed. 

Though Rohe was working as the physician communications lead for Children’s Healthcare of Atlanta (CHOA) at the time, and she and her husband had taken birth education classes, she says she went into childbirth with little understanding of the types of injuries it could entail. She had never heard of the condition that left Eva’s arm paralyzed—brachial plexus birth palsy (OBPI). She didn’t know if the injury was temporary or permanent and had no idea what types of therapy or treatment to pursue. 

In looking for answers, Rohe discovered that childbirth injuries are not tracked on a state or national level. “Maternal mortality is broadly studied,” says Rohe. “Georgia has a maternal mortality review board—it’s one of the few states that does—but childbirth injuries are rarely discussed.”

So she began what would become the ROBIN Project, which stands for Reducing OBstetric INjury. Connections she had made at CHOA and at Rollins as a student and as a member of the alumni association helped her get her project off the ground. 

The first order of business was to determine how common OPBI is in Georgia. At her request, the Georgia Department of Public Health (GDPH) did a study looking at birth records and found 43.3 out of every 100,000 live births had reported severe birth injuries, including OPBI. However, OPBI is often not diagnosed until six to eight weeks after birth, so it is often absent from birth records. Eva’s birth record listed only “floppy arm.”

To draw a more complete picture, Rohe and a fellow Rollins alum Allan Peljovich 89MPH secured funding to do a statewide study using data from GDPH and the Department of Community Health, which administers Medicaid. “It will be the first of its kind in the country because we are using reimbursement codes instead of looking at electronic birth records,”
says Rohe. “We hope to use that data to inform practice and policy.”

Many infants are referred to treatment late or referred to the wrong specialist, for example. Babies with OPBI need to see a pediatric orthopedic specialist. Most women use up the 12 weeks allowed under the Family and Medical Leave Act during maternity leave, but mothers and infants who suffer birth injuries may require frequent and recurring medical and therapy visits for many months or years. And insurance can be hard to navigate—one mother told Rohe her insurance company labeled her baby’s OBPI
as a preexisting condition and initially refused coverage. 

“If we can get reliable data on birth injuries, we can make sure babies are being referred to treatment earlier rather than later. Perhaps we could inform policy on FMLA leave and insurance coverage. Eva had her first surgery at six months and is still in regular therapy. The whole goal is to make sure parents are getting the appropriate information they need,” says Rohe.

In the meantime, Rohe has already raised awareness of the issue. Working with both houses of the Georgia Legislature, she was able to have March 16 designated Birth Safety Awareness Day. Unfortunately, March 16, 2020, was also the day that government offices closed for the COVID-19 pandemic, so the inaugural event at the state capitol had to be canceled. “That was disappointing, but it was inspiring to see both sides of the political spectrum come together to designate this day,” says Rohe. “Birth safety is something everyone can agree on.”

Rohe is currently director of communications for the National Association of Chronic Disease Directors, and she works on the ROBIN Project in her free time. Eventually, however, she would like to register the project as a nonprofit and expand its scope beyond OBPI to include all birth injuries. “OBPI is sort of the canary in the coal mine,” says Rohe. “It’s obviously personal for me, but it can also serve as an indication of the incidence of other birth injuries. This work is how I deal with the fact that Eva’s recovery is so unknown. I don’t know what her life is going to be like. Working on the ROBIN Project helps me cope.”