GRAND JUNCTION, Colo. (KKCO/KJCT)-- For most mothers, any unexpected change can be concerning during a pregnancy.
A mom from Grand Junction has been diagnosed with a rare syndrome that can have a massive impact on her baby. In fact, the baby has a 70 percent chance of dying in the womb or a month after birth.
Alex Clark's first child was healthy, but her second, Camden, has to wear a pacemaker for the rest of his life.
Camden had a heart block, which means his heart was beating too slow and he would need a pacemaker as soon as he was born if he survived.
She’s taking a chance on her third child now, hoping for the best.
"It’s something we discussed with our providers really extensively, before we made the decision to have another child, we knew the risk,” said Alexandria Clark.
Alex is 22 weeks pregnant and was referred to St. Mary’s Maternal-Fetal Medicine Clinic.
"She was checking everything, the anatomy and then she went to the heart rate,” said Alex.
She discovered she had a rare condition that can cause a heart abnormality in her baby two years ago when she was 20 weeks pregnant with Camden. Only 2 percent of pregnant women have this condition.
"Sjogren's Syndrome is an autoimmune disorder in which the mom forms antibodies and those antibodies cross over the placenta to the baby, and actually can bind to the baby's heart and cause heart block,” said Dr. Amy Gagnon, a physician with St. Mary’s Maternal Fetal Medicine Clinic
Doctors say they don't know what causes it or how severe it can be.
"Awful, it was shocking and pretty devastated honestly,” said Alex.
Alex would have had to travel to Denver’s Children Hospital for treatment, but luckily, she can stay right at home, as both hospitals have a Telemedicine system, using Alex as one of their first patients.
Alex attends her weekly appointments in Grand Junction while video calling her doctors live in Denver.
"About 70 percent of fetuses and newborns die that have these conditions either before they are born or in the first month of life,” said Dr. Bettia Cuneo, of Pediatric Cardiologist at Children’s Hospital of Colorado in Denver.
This syndrome has a 20 percent chance of reoccurring in her current pregnancy, especially during weeks 16 to 26. She will be monitored almost weekly until the birth.
After her most recent appointment, she can breathe a little easier as her baby is showing no signs of heart block.
"Her heart looked boringly normal, she said, which is exactly what I want,” said Clark.
Doctors at the clinic say they video call three times a week, helping dozens of patients.
Alex is on a medication called Plaquenil that lowers her baby’s chances of developing heart block by 50 percent.
She showed no signs at her appointment but could develop it as the weeks progress. As for her second child Cameron, he is doing well with his new pacemaker but is monitored closely.
This clinic is by referral only, they have expanded the program to Gunnison and are working on other locations.