Genetic Counseling Amidst a Pandemic: What to do about your Prenatal Appointments
by Blair Stevens, MS, CGC
COVID-19 has significantly impacted the lives of people all around the world. While the pandemic’s effect on hospitals and the frontline healthcare workers is palpable, other aspects of healthcare are also affected. Elective surgeries are cancelled, medical supplies are scarce and clinical care teams struggle to rapidly transition to telehealth services so they are easily accessible to patients. Meanwhile, patients are fearful of exposure yet still need essential healthcare services unrelated to the pandemic.
In these chaotic times, few understand the fear and confusion that expectant mothers are facing. Will they be able to safely deliver their children in hospitals? Can they make it to their appointments, or should they even be going to them?
Essential Appointments: Why Prenatal Visits Can’t Wait
Amidst lockdown measures and stay-at-home orders, pregnant individuals continue to go to their appointments to be screened for common obstetric complications (such as diabetes or high blood pressure), to have blood drawn for infectious and genetic disease screening and to undergo at least one first and one second trimester ultrasound to check on the baby’s development. Delays in these appointments can lead to untreated maternal conditions and delays in learning critical information about fetal wellbeing. Many pregnant patients are left with no choice but to attend prenatal visits by themselves, as hospitals and clinics have restricted visitors from accompanying family members (including spouses) to medical appointments. These safety precautions, while appropriate, not only deprive expectant fathers and family members of beautiful moments - such as hearing the heartbeat and seeing the tiny hands of their unborn baby for the first time - but more importantly, can rob an expectant mother of her support system if an abnormality is diagnosed.
Prenatal genetic counselors are often the experts helping these pregnant patients and their families navigate the unanticipated and sometimes frightening diagnosis of a birth defect or genetic condition. Many prenatal genetic counselors report that they are still providing face to face services despite the risks of COVID-19 transmission due to the extremely sensitive nature of helping families in these uncertain and unpredictable times. Genetic counselors understand that compassion, empathy and connection are always “essential” in healthcare, and even more so in times of uncertainty.
As a prenatal counselor in a center where we diagnose serious and even life-threatening fetal abnormalities on a daily basis, it is heartbreaking to see a mother struggling to adapt to a new diagnosis, and to not be able to show her compassion through touch or even my facial expressions; our eyes are the only things visible to one another due to the masks we both wear. I can only hope that my eyes convey the empathy and compassion I have for her as much as her eyes convey her need for support to me.
This is a very real example to show how much genetic counseling services have been greatly impacted by this pandemic. While many genetic counselors are rescheduling their patients and delaying new appointments that are deemed non-essential, the thousands of expectant parents out there cannot pause their pregnancies in order to stay safe in the confines of their homes.
Pregnant women or women who are attempting to get pregnant may not be able to wait to schedule an appointment with a genetic counselor when:
- Their fetus is found to have a birth defect, such as a heart defect or brain abnormality
- The fetus is found to have an increased risk for a genetic condition, such as Down syndrome
- A couple who wants to become pregnant have positive carrier screens for conditions such as Tay Sachs or Spinal Muscular Atrophy
Other situations may also require an immediate genetic counseling appointment. If you are wondering whether you should schedule an appointment, find a genetic counselor in your area at findageneticcounselor.com.
Genetic Counselors Respond with Telehealth
To meet this need, many clinical practices are transitioning to telehealth services to reduce the chance of COVID-19 transmission. In these instances, the genetic counseling appointment happens either over the phone or on a secure video platform. The transition to telehealth has proven difficult, as most clinics did not provide remote services prior to this pandemic. Additionally, a common barrier to providing genetic counseling via telehealth is related to insurance coverage. Board-certified genetic counselors are not currently recognized by Medicare as providers of genetic counseling services. Therefore, telehealth services by board-certified genetic counselors are not available for Medicare beneficiaries, nor are they available to many Medicaid patients who have policies that follow Medicare coverage policies. We are advocating for changes to Medicare policy, and invite you to learn more and advocate with us here. Despite these challenges, genetic services for these patients must continue in some way, shape or form.
Just a short time ago, my clinic started using telemedicine to see these patients, initially leaving me asking, “Can this compassion be relayed over a screen? Or through a phone?” Fortunately, research (and now my own experience) has shown high levels of patient satisfaction with telehealth services but in these uniquely stressful circumstances, it is hard to replace the power of physical connection.
This pandemic has been crippling in so many ways, but as disastrous times often do, it has also brought beautiful and inspiring stories of kindness, resilience, strength and collaboration. I am grateful for patients who are flexible and understanding of our need to counsel them on the phone and to all of the genetic counselors, doctors, nurses and other healthcare providers that are still coming into the hospitals and clinics as well as those who are working remotely. I know I can speak on behalf of all genetic counselors when I say that we are grateful to have purpose through helping patients and their families in these uncertain times.
Blair Stevens, MS, CGC, is a National Society of Genetic Counselors Prenatal Expert and a genetic counselor at University of Texas Health Science Center.