Growing consumer awareness and the increasing availability of genetic tests for many conditions are likely increasing the number of questions your patients are asking about their risk of disease, the risk to their offspring and whether genetic testing is right for them. Genetic counselors can help you address your patients’ needs and incorporate genetics and genomics into your practice.
1. What is Fetal Intervention and Therapy?
Fetal Intervention and Therapy (FIT) is a specialized area of prenatal genetics that focuses on pregnancies diagnosed with fetal anomalies. Fetal therapy refers to the diagnosis, and sometimes treatment, of fetal anomalies before birth.
Genetic counselors work as part of a multidisciplinary team in centers that provide comprehensive diagnostic services. Fetal intervention centers typically include many different and highly specialized care providers, such as fetal surgeons and maternal fetal medicine specialists. Some centers offer fetal interventions, which can range from less invasive procedures such as amnioreductions to more invasive procedures like open fetal surgery.
2. Who should I refer to a Fetal Intervention and Therapy genetic counselor?
Patients with pregnancies diagnosed with fetal anomalies, including:
- Multiple congenital anomalies
- Conditions for which fetal intervention may be available, such as myelomeningocele and congenital pulmonary airway malformation (CPAM)
- Conditions for which specialized care will be required at delivery, including ex utero intrapartum treatment (EXIT) or extra corporeal membrane oxygenation (ECMO)
- Conditions that will require care by pediatric specialists after delivery
For more information fetal therapy centers in the United States and which procedures they offer, please see the following document created by the FIT Special Interest Group (SIG): “Fetal Interventions by Center”
3. What benefit does a Fetal Intervention and Therapy genetic counselor provide to my patients?
A Fetal Intervention and Therapy genetic counselor provides a thorough assessment of the family and personal medical history. In this assessment, we address factors related to the fetal condition(s) for which the patient is referred, as well as other factors that could affect future pregnancies or personal health. We discuss recurrence risks for future pregnancies and risks to other family members, as well as available screening options for the condition.
We also facilitates the genetic testing process, by identifying the most useful genetic test for the patient and their family. We help coordinate the testing process, as needed, and communicate results to the patient and their healthcare providers.
We also assist with coordination of post-natal care, and help communicate recommendations to families and healthcare providers. We work as liaisons to pediatric providers and help families bridge the gap between pre- and post-natal care.
Finally, we help patients and their families deal with the psychosocial aspects of a fetal diagnosis. We discuss pregnancy options and provide emotional support. We assist with referral to other resources, like counselors, support groups or even other families as needed.
4. What do I tell my patient about a referral to Fetal Intervention and Therapy genetics?
Your patients can expect the genetic counselor to review their medical history and family history. We will discuss any testing options that may be available to provide more information regarding the patient's pregnancy. We will discuss the fetal condition and review option for intervention, if available, in terms that make sense to the patient. We will also provide support and referrals to community resources as needed. Each center has their own evaluation process, so the patient may have appointments with other professionals as well.
5. Where can I find a genetic counselor specializing in Fetal Intervention and Therapy genetics?
Search the NSGC Find a Genetic Counselor Directory or review a list of Fetal Intervention Centers.