Beyond Therapy: What Fetal Therapy Coordinators Tell Us

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In Utero Insights

The role of the fetal therapy coordinator (FTC) is an evolving specialty for clinicians. In 1995, Children’s Hospital of Philadelphia (CHOP) was one of only three fetal treatment centers nationally. Now, we are one of 50 worldwide, with more to come.

A fetal therapy coordinator is a clinician families trust to know their story and guide them — literally and figuratively — throughout the pregnancy. FTCs have been referred to in the literature as the glue, the fulcrum and the linchpin. FTCs are the nexus of multidisciplinary care, with the patient in the center.

We ensure translational and consistent messaging for the patient and the family. We know that engaging layers of disciplines changes care management and reduces patient and family anxiety. We know that information empowers families. The FTC is often the first contact for the patient. We provide verbal, written and online resources, and may connect the patient to families that have had similar experiences.

The FTC receives referrals, removes all barriers to care, and minimizes the wait for a diagnostic evaluation and counseling appointment. We order diagnostic testing, including Level II ultrasound, fetal MRI and fetal echocardiogram, based on the referring physician’s diagnosis and record review. Depending on the diagnosis, the FTC coordinates anomaly-specific counseling with the maternal-fetal medicine physicians, surgeons and subspecialists. We facilitate implementation of the plan, follow-up prenatal diagnostics and surveillance. We work with our colleagues in neonatology and other pediatric subspecialties to ensure continuity of care postnatally.

As a result of the proliferation of fetal treatment centers and fetal therapy coordinators, the Fetal Therapy Nurse Network (FTNN) was established in 2015. The FTNN has grown from 25 members in 2015 to 113 members in 2017. We have found we have many commonalities in practice, but there are also many variations. As current president of the network, I recently crafted and sent a Fetal Therapy Practice Survey to quantify these variations in practice and evaluate the background and experience of FTCs.

The survey had a 76 percent response rate and found:

  • The majority of FTNN members hold a master’s degree or bachelor’s degree in Nursing
  • Perinatal and neonatal nursing account for the majority of members’ clinical background
  • 73 percent of members speak to patients during the first phone call
  • 50 percent attend subspecialty consults
  • 90 percent perform follow-up calls
  • 50 percent interact with insurance companies for education and approval

Preparation of fetal therapy coordinators is variable, however nursing practice, reducing barriers to care, and providing patient and family support were found to be universal. A research committee and a professional practice committee will aid us as we undertake a qualitative study with a Robert Wood Johnson Scholar at Yale University. Our goals are to describe best practice models of coordinated care and develop a core curriculum and a certification for fetal therapy nursing care.

Screenshot of CFDT tour video

Tour our Fetal Center

Watch this video tour to learn what to expect at your first visit to the Wood Center for Fetal Diagnosis and Treatment.

Pregnant Mom and Child

What to Expect

From the moment of referral through delivery and postnatal care, your family can expect a supportive experience when you come to us with a diagnosis of a birth defect.