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How the Fetal Medicine Institute Creates a Road Map for Expecting Parents

Wednesday, October 1, 2014

Pregnancy can be a joyous time, but it can also be a scary time. One thing that can add fear to a pregnancy is when something unusual happens along the way. It could be an abnormality in a routine test or maybe your doctor wants to find out more information about something seen on an ultrasound.

That’s where Children’s National’s Fetal Medicine Institute team comes in. The Institute combines the expertise of Children’s National's pediatric specialists, three genetic counselors, and a nurse practitioner to help families during this stressful time.

“We help patients to learn and interpret as much information as possible about their pregnancy,” said Margaret Menzel, GCG, MS, one of the Institute's board-certified genetic counselors and care coordinators. “A patient may come to see us to talk about a concern they have about a family history of a particular genetic abnormality prior to conception, or we may see them on a more urgent basis when the possibility of a fetal abnormality arises during a pregnancy.”

For example, a family might be referred to Children’s National's at 20 weeks gestation because they are carrying a fetus with bilateral clubbed feet and need more testing. When they come to the Fetal Medicine Institute, they will have an ultrasound and meet with a genetic counselor and a pediatric orthopaedic surgeon and learn what having bilateral clubbed feet means and what type of evaluation and/or intervention to expect after delivery.

Additionally, many congenital heart defects can be diagnosed during pregnancy. The Institute has specialists in fetal cardiology who help families plan, prepare, and manage a serious fetal heart defect diagnoses.

An obstetrician/gynecologist, perinatologist, or radiologist may refer a family to the Institute for more tests, which may include:
“The number of people who are involved in this multidisciplinary team and the wide range of expertise here is what makes us so unique. We truly do have the top physicians here in every specialty,” Menzel added. “Our pediatric patients have access to top notch care and our fetal patients have access to both during and after pregnancy.”

The Fetal Medicine Institute team works with the patient’s referring physician immediately following the initial visit to discuss next steps and any delivery management and planning, like whether or not a baby will need to be immediately transferred to the Children’s National's Neonatal Intensive Care Unit (NICU). The Institute's specialists also provide care to the baby after birth to provide the family with continuity of care and ensure access to all required special services.

“What most families are looking for is a roadmap. Anytime there is uncertainty in a pregnancy, there is a lot of anxiety, so our goal is to give families the tools to be able to deal with this,” she said.

Birth defects can be isolated or present as part of an underlying genetic syndrome. The fetal geneticists on the team play an important role in working with the genetic counselors to discuss potential diagnoses with families during a pregnancy or as part of pregnancy planning.

The team also works with outside social workers, counselors, area support groups, and even past families that have gone through similar experiences to help support families.

“We want to empower families with information,” Menzel said. “We want to make them feel that they have gotten as much information as is possible during the pregnancy. In a time when many families feel they have lost control of what is happening, we hope to make them feel that they are at the right place, have tapped into all the right resources, and that we are here with them to hold their hand no matter what happens.”


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