Providence’s Maternal-Fetal Medicine supports families needing extra care during pregnancy and beyond
|Jed, Amy and 2-year-old Josiah await the arrival of the newest Nelsen family member. (Photo by Dean Davis.)
Amy Nelsen is returning to her specialty care team, at Providence Center for Maternal-Fetal Medicine, for the support and guidance she needs during her high-risk pregnancy. The expectant mother has an inherited connective tissue disorder that could complicate her pregnancy, labor, delivery and postpartum period.
“I have complete confidence in Providence’s varied specialties and know how well they work together to give me individualized care for my unique case,” says Nelsen, 33, of Nine Mile Falls.
Nelsen discovered her condition in 2015 when she arrived at Providence Maternal-Fetal Medicine for her first pregnancy. It was then that Tanya Lehfeldt, MS, CGC, a licensed genetic counselor, reviewed Nelsen’s family history and questioned a condition that Nelsen and her mother were told they had, based on a diagnosis nearly 20 years ago.
All this time, Nelsen thought it might be Marfan syndrome, but Lehfeldt believed she did not meet the criteria. With Lehfeldt’s guidance, Nelsen had genetic testing done, and a mutation was found in a gene that causes Loeys-Dietz syndrome, which poses a greater risk than Marfan on her children, who would have a 50 percent chance of the same gene mutation.
“She’s monitored very carefully by Maternal-Fetal Medicine, cardiology and the whole team,” Lehfeldt says. “We have her pregnancy and birth plan, working with obstetricians, and will test the baby’s cord blood after delivery to see if the baby is affected.”
Understanding the Stakes
Loeys-Dietz syndrome is characterized by an enlarged aorta, which can stretch and weaken, often causing an aneurysm, which could burst. The condition is life-threatening: The risk of aortic dissection (tearing) and uterine rupture become greater during pregnancy and directly after, requiring increased monitoring of mother and baby.
Nelsen and her husband, Jed, welcomed a healthy baby boy, Josiah, two years ago at Providence Sacred Heart Medical Center & Children’s Hospital.
Her second pregnancy ended tragically; the increased monitoring she received due to her condition allowed the care team to quickly discover the pregnancy was ectopic, where the fetus grows outside the uterus and can’t survive. The team helped the family through the traumatic experience.
Now, they are waiting for Josiah’s sibling to be born.
Caring for Mother and Baby
Nelsen says the supportive care she receives at Providence Center for Maternal-Fetal Medicine includes specialists monitoring any aorta enlargements, uterine distress or fetal complications. And if it’s needed, Nelsen’s newborn will have access to Sacred Heart Children’s Hospital, the only Level II pediatric trauma center and highest and only Level IV neonatal intensive care unit in eastern Washington.
Douglas Barber, M.D., medical director for Providence’s Maternal-Fetal Medicine, says people like Nelsen can, in one day and in one clinic, visit a genetic counselor, a cardiologist and a high-risk obstetrics and gynecology physician and get an ultrasound and echocardiogram.
“For a patient like Amy, that’s empowering,” Dr. Barber says. “Providing this level of care in Spokane for patients and their primary care providers—those are a lot of tools and a lot of skilled people talking about you. I am proud of what we’ve done to make this available in our region.”
Making Informed Decisions
Lehfeldt says Nelsen’s condition highlights the role of maternalfetal medicine and genetics. “Genetic counseling provides personalized care to patients to help make decisions,” Lehfeldt says. “We work in different areas including cardiology, prenatal, neurology and cancer clinics. The end goal is placing patients like Amy in the middle of a coordinated care plan.”
As Nelsen anxiously awaits the arrival of her baby, perinatal care after delivery becomes crucial with genetic cases, Dr. Barber says. “It’s our job to make sure testing takes place when and how it’s appropriate.”
Adds Nelsen, “Genetic testing confirmed my diagnosis and has prepared me for my pregnancy and birth. Once they had my specific family gene, it was then easy to get everyone in the family tested because of mine—changing our family’s medical needs and outlook for generations.”