Neonatal Herpes and the Urgency for Change

Today in America, guidelines for prenatal care put infants life at risk, and increase the risk of severe adverse outcomes that render children severely disabled. Neonatal herpes (nHSV), is a genital herpes infection that impacts newborns and is a serious health condition with devastating health outcomes. Herpes Simplex Virus is transmitted through the birth canal or congenitally from the mother. While neonatal herpes causes painful skin, eye, and/or mouth lesions, it also has severe and lasting neurological impacts, and it can be fatal 60% of the time.

Call to action: Join our neonatal herpes task force!

Neonatal herpes is not a reportable disease. However, surveillance data tells us cases are rising, with estimates of 2,000 per 100,000 live births. Surveillance estimates that 1,000 infants die annually in the US as a result of this infection. 

There have been many arguments for the reportability of this disease so that we can understand it and better respond. Yet guidance for reportability hasn’t changed and surveillance data is limited.

Health Outcomes of Neonatal Herpes

Neonatal herpes manifests in three ways, skin/eyes/mouth, disseminated disease, or a brain (or CNS) infection.

Skin Eye and Mouth

45% of neonatal herpes cases are an SEM infection. In an SEM infection, no internal organs are affected and the disease is limited to the skin, eyes, and mouth with virtually no mortality. Although the effects are typically confined, there are some instances where SEM herpes has led to a condition known as HSV keratitis, which is when HSV infects the cornea. When this occurs, the cornea may scar, or even blindness can occur, which is enough evidence to raise awareness of these conditions as prompt intervention can be effectively preventative. Most infants who survive with SEM herpes, however, do suffer considerable morbidity as a result of the skin disease recurrences.

Disseminated Disease

25% of neonatal herpes cases are disseminated disease where the infection reaches internal organs. When neonatal herpes reaches the internal organs or brain it is more serious and has a higher fatality rate and risk of lasting permanent brain injury. Disseminated disease, where internal organs are impacted, it usually affects vital organs, such as the liver and lungs. Most cases of mortality as a result of disseminated disease were attributed to pulmonary interference and liver dysfunction. Some signs of the disseminated disease include respiratory distress and seizures, which are incredibly dangerous for neonates.

Brain or Central Nervous System Infection

And most dangerous, accounting for 30% of all cases, another clinical outcome of neonatal herpes is localized brain or CNS infection, which is characterized by inflammation affecting the brain and spinal cord, which often is fatal and leads to long-term health conditions. Pediatric infections that impact the brain have long been established causes of lifelong neurological, behavioral and intellectual disabilities.

Consequences for surviving infants can be dire and the most fatal manifestation of the disease. Infants surviving neonatal herpes often have permanent brain damage that can inhibit the basic physiological functions needed for a normal life. This form of disease can lead to cerebral palsy, mental retardation, microcephaly, other forms of neurological disorder, and behavioral, or intellectual outcomes.

Imperative for change for Neonatal Herpes

Current guidelines that recommend against testing for herpes simplex virus or genital herpes in pregnant mothers are putting infants and families at risk. Current guidance does recommend screening for a history of symptoms – which is counterintuitive as the infection is primarily asymptomatic with 85-90% of those living with the infection unaware of their seropositive status. In fact, USPSTF and the CDC recommend against it. ACOG recommends against testing.

Women, families, and infants in this country certainly deserve better and deserve to be protected with updated guidelines for clinical care that make sense. We can no longer guess or assume that clinical providers will see symptoms of a genital herpes infection or that a mother will be aware of her status when we understand the epidemiology of the infection and it’s primarly asymptomatic nature. 

With only 10-15% of women aware of their seropositive status, we have a dangerous loophole for occurrences of neonatal herpes. Furthermore, in terms of testing, infants who are suspected of having herpes, are recommended to be tested via diagnostic polymerase chain reaction (PCR) tests. Although a well-intentioned effort, this recommendation remains inadequate as recommending treatment or screening as a result of suspicion is substandard because infections can be asymptomatic.

Herpes Cure Advocacy has launched a new Neonatal Herpes Advocacy Task Force to provide community for impacted families, engage with stakeholders, physicians, and scientists, and create change to better protect Americans from neonatal herpes. Click here to learn more!

Guidelines for Treatment and Prevention of Neonatal Herpes

Guidance needs to evolve urgently, to recommend screening that protects newborn babies and alleviates these tragic outcomes. Additionally, the universal screening, potentially both in prenatal care and at delivery, will allow mothers who are asymptomatic to be aware of their status, thus mitigating the spread of herpes and the resulting sequelae.

If we don’t update guidance – this dangerous loophole in clinical and prenatal care persists.

If we don’t update guidance – this dangerous loophole in clinical and prenatal care persists. And as physicians, we need to do better. To do no harm means to use the tools that we have to preserve and protect health and life. And why aren’t we?

Considering the dire impact on these lives proves that more robust treatment and prevention strategies are essential and long overdue. We must work together to advocate for change, making every effort to protect the health of children and families in America.

Herpes Cure Advocacy: Neonatal Task Force

Let’s advocate for change together. Professionals, families, policy makers, all stakeholders are welcome.

Have you been impacted by neonatal herpes? Please contact us to tell us your story.

Click here to learn more and join the neonatal herpes task force!