For about a week, Charlotte Raveney and Mohamed Eisawy's daughter Mira was a happy, bubbly baby. Her delivery was exhausting, though, and Raveney developed a slight fever and a cold sore on her bottom lip three days later -- the first one she had ever had.
But the sore was gone the next day, and Raveney did not think about it again. She did not connect her cold sore to her daughter's death a week later.
Mira died after contracting herpes simplex virus 1 (HSV-1), the same virus that can cause cold sores. Initially, Mira was fussy, would not breast feed for more than a few minutes, and had a pink and sticky left eye.
One night, Mira developed a rash on her stomach and went rigid on a table while her father was changing her. Her parents rushed her to the hospital, but by then the damage was done.
"She looked like a frozen chicken, lying there," Raveney, 32, said, recalling her daughter's puffed out stomach and rigid limbs.
Most babies who contract herpes do so from their infected mothers via the birth canal.
Far less common is for a neonate -- a baby in the first month of life -- to become infected through contact with another infected person, according to Dr. Jon Abramson, chairman of the Department of Pediatrics at Wake Forest University School of Medicine, who has only seen two such cases during his career.
"Herpes virus in a neonate is a dangerous infection," Abramson said. "And most parents aren't aware."
But Raveney was not infected with HSV-1 during her pregnancy because Mira's blood tests showed no antibodies against the virus, antibodies that would have been passed through the placenta.
Raveney believed she contracted HSV-1 in the days following Mira's birth, likely from her husband, who had become infected years earlier, but had not had any outbreaks since the two had been together.
In Raveneys' case, her healthy pregnancy was a detriment to Mira's fragile immune system. But catching a cold or even the presence of antibodies against another herpes virus, such as chicken pox, which Raveney once had, would not have offered protection because the viruses are too dissimilar to herpes simplex.
Herpes simplex is part of a family of herpes DNA viruses that include chicken pox and shingles. HSV-1 is a predominantly oral infection, causing cold sores. HSV-2 is the variety that predominantly causes genital herpes.
During the initial infection, the virus incorporates its DNA into the host cell where it may remain dormant for many years. When it activates, the viral DNA makes copies of the virus to infect other cells, causing a bout of illness.
The virus can be transmitted at any time through close contact with a person's saliva or genital secretions, although a person is most contagious during an outbreak.
Although Raveney knows Mira could have been infected by her father or a member of the hospital staff, she was most contagious at the time Mira contracted the virus, likely through her left eye.
"I've got huge guilt issues over this," Raveney said. "But it could have been anything."
Abramson said fussy or sick babies usually have doctors thinking about bacterial infections. But there are some signs, such as a crop of blisters or an increase in liver enzymes, that may indicate a viral infection.
"What makes you decide to do something further depends on what the baby looks like," Abramson said. "This is a disease that is much less common than bacterial infections."
A Quiet Virus
About 1,500 to 2,200 babies under 1 month old contract herpes each year in the United States, and untreated, the virus is fatal in up to 85 percent of cases. The majority of neonatal herpes simplex infections are caused by HSV-2, but about 30 percent are caused by HSV-1, according to the American Academy of Family Physicians.
A specialist in pediatric infectious disease may be more finely tuned to infections like herpes than another type of doctor. Unfortunately, without active signs of infection, the symptoms of HSV-1 are non-specific. Indeed, the advice Raveney received from general practitioners and midwives led her to believe her daughter was not ill and was simply taking some time to settle into the family routine.
A herpes infection in an infant may have caught anyone by surprise. Raveney said she read voraciously while she was pregnant and never came across any information on the risks of herpes viruses for babies. Doctors she spoke with following Mira's death told Raveney they tend not to bring up herpes as a risk factor with parents to avoid panic and anxiety for an uncommon complication.
"What's one sentence in a book or one word from a midwife?" Ravaney said. "I just think that even if it's just one baby, you need to warn people of that."
Abramson pointed out that doctors will bring up the risks and possible courses of action for birth and child care if there is a clear indication or past history that one or both parents has a herpes simplex virus. Otherwise, Abramson said there is so much ground to cover with expecting parents that a rare complication like herpes is often left out of the discussion.
Abramson added there are some things parents who have a herpes simplex virus can do to reduce the chance of passing it on to their infants, including washing their hands before and after touching their children and wearing masks to prevent viral transfer from the nose or mouth to the hands and then on to the baby.
Since Mira's death, Raveney has learned of three other families who have lost children due to a herpes virus infection.
"That breaks my heart," Raveney said. "It shows that it happens, and people don't know about it and don't talk about it."