Tag Archive for: prenatal pediatrics

growth of the Children's National Spina Bifida Program

A look at the Children’s National Spina Bifida Program

The Spina Bifida Program at Children’s National Hospital, led by co-directors, Christina Ho, M.D., and Briony Varda, M.D., has seen impressive growth and there are plans to continue expanding the program. Drs. Ho and Varda share insights on the multidisciplinary care being provided, along with their plans for the future of the program.

Q: How would you describe the growth of the program?

A: The growth of the Spina Bifida Program has been remarkable! The graph below really shows it all (more than a 25% increase in patient visits in the past year). We currently hold multidisciplinary programs including providers from neurosurgery (Robert Keating, M.D.), orthopaedic surgery (Matthew Oetgen, M.D.), physical medicine and rehabilitation (Mi Ran Shin, M.D.), urology (Briony Varda, M.D. and Christina Ho, M.D.), and expanded to include bowel management (Celicia Little, N.P.), gynecology (Allison Mayhew, M.D.) for our adolescent patients, as well as a dedicated nurse, Nicole Allentuck, R.N., and program associate, Christine Scott.

We are extremely proud of how the program has grown, particularly through the past two years, with the advent of our adolescent clinic and having a dedicated supportive team that ensures we have significant re-engagement of patients who had previously been lost to care. We are also working with the Prenatal Pediatrics Institute at Children’s National to enhance our prenatal care for patients diagnosed with spina bifida.

growth of the Children's National Spina Bifida Program

Q: What advancements is the spina bifida program making that benefit patients?

A: We have developed a transition clinic for our adolescent spina bifida patients to help address goals of care, independence with care and readiness for transition to adult providers. Our program coordinator, Celicia Little, N.P., also oversees our bowel management program to provide specialized bowel management care for our patients. We have been working on educational information specific to different areas within spina bifida, including how to catheterize, common medications, bowel management and anticipatory guidance. This helps to provide longevity for our patients as well.  We are evaluating ways to decrease visits to the emergency department and ensure appropriate antibiotic usage with proper diagnoses of urinary infections in patients who perform CIC.  To further our goal of providing longitudinal care within our program, we have engaged gynecology colleagues to see patients within our adolescent clinic and begin promoting independence through perpetuated discussions (e.g., are they able to schedule their own physician appointments or grocery shop for themselves?) in preparation for adult transitional care. Additionally, we readily offer telehealth visits for convenience and in hopes of easing access to care.

Q: Looking ahead, what’s next for the Spina Bifida Program? How will we continue to measure success?

A: We are excited to continue expanding our Spina Bifida Program. We currently care for more than 500 patients within the Washington, D.C., Maryland and Virginia areas. We want to continue to include patient narratives through our research initiatives to inform quality of care, including decreasing E.D. utilization and needless antibiotic use. We also want to expand our adolescent program to include sexual healthcare as they transition to adult care with our adult collaborators within MedStar and GWU. We would like to provide more comprehensive care, improve access to care, and ensure patients and families have utilization of the armamentaria of medical resources available at Children’s National.

pregnant hispanic woman

Significant health disparities in detection of critical congenital heart disease

pregnant hispanic woman

Mothers who are Hispanic or who come from rural or low socioeconomic status neighborhoods are less likely to have their child’s critical heart condition diagnosed before birth, according to a new study in the journal Circulation.

Mothers who are Hispanic or who come from rural or low socioeconomic status neighborhoods are less likely to have their child’s critical heart condition diagnosed before birth, according to a new study in the journal Circulation.

This is the largest and most geographically diverse study of these challenges to date. The study compared patient data of more than 1,800 children from the United State and Canada diagnosed with two of the most common, and the most serious, critical congenital heart defects: hypoplastic left heart syndrome (HLHS), when the left side of the heart is not developed completely, and transposition of the great arteries (TGA), when the two main arteries that carry blood away from the heart are reversed.

“The earlier we diagnose a heart defect, especially a serious one such as HLHS or TGA, the sooner we can make a plan for how to safely deliver the infant and reduce the impacts of that heart defect on the rest of the body,” says Anita Krishnan, M.D., first author and cardiologist at Children’s National Hospital. “Early detection and diagnosis of these conditions is crucial to ensuring the best possible outcome for the child, especially in protecting the brain.”

Even when infants’ heart defects were detected before birth, babies from neighborhoods with lower socioeconomic status were detected later in gestation than others.

“The COVID-19 pandemic has brought the idea of significant disparities in health care to the forefront of our national attention,” says Dr. Krishnan. “Even though many health care providers have seen these inequities firsthand in their own clinical experience, it was still surprising to see the strength of the association between socioeconomic position and the care available to mothers.”

In both the United States and Canada, expectant mothers are first screened as part of routine prenatal care in the first trimester for early signs of congenital heart defects and other genetic disorders via blood screen and ultrasound. In the second trimester, a comprehensive ultrasound evaluation for structural anomalies is routine. If any issues are detected, the mother is referred for a fetal echocardiogram and counseling.

The authors suggest that decreased linkages between neighborhoods and people identified in the study and subspecialists could contribute to the disparities found in the study.

“Prenatal detection rates may improve if we are able to leverage outreach and telehealth to strengthen the relationships between these specialties and the groups we identified in the study,” Dr. Krishnan says.

The study included a total of 1,862 patients, including 1,171 patients with HLHS (91.8% prenatally diagnosed) and 691 with TGA (58% prenatally diagnosed). The study group included prenatally diagnosed fetuses with HLHS or TGA and postnatally diagnosed infants less than two months old with HLHS or TGA. Data was collected from institutions participating in the Fetal Heart Society, a non-profit 501(c) multicenter research collaborative with a mission to advance the field of fetal cardiovascular care and science. Mary Donofrio, M.D., director of Prenatal Cardiology at Children’s National, is society president and served as a senior author on this study.

Read the AHA’s press release: Prenatal detection of heart defects lower in rural, poor areas and among Hispanic women.