We lost our baby daughter to neonatal herpes

We lost our baby to neonatal herpes, and her life mattered. Our daughter would be turning a year old this coming September 2022. Instead of celebrating her birth, though, we will be gathering to memorialize her 27 days of life. Our daughter died a horrible death due to acquiring HSV-2 in the birth canal, also known as Neonatal Herpes.

As I write this, the guilt and anger that I must reckon with each day fills my chest with unbearable grief knowing that she died because of me. However, by telling our story it is my intention that some of my guilt and anger be used to create justice and change in the standards of care for women as well as infants. What happened to our baby is inexcusable because it was avoidable. If I had known my status, the proper steps would have been taken to ensure that our first and only child entered this world safely and in good health. 

I am 37 years old and had to go through IVF to create the embryo that would later develop into our beautiful daughter. I think back on all of the blood tests, invasive ultrasounds, vaginal examinations, and wonder how something like this could get past all of those screenings. I am fortunate in that I had access to the best doctors and medical care available and attended every appointment in addition to monthly ultrasounds due to my “geriatric” age. My pregnancy was wonderful. It was easy and I loved having 38 weeks to imagine what this creature would be like and who she would become. If you are a parent, you know that the imagining of who your baby is and what life will be like with them is a large part of the waiting and preparing for their arrival. When your baby is born, so are all your hopes and dreams for them.

Our daughter was delivered vaginally and without an epidural. I, like many mothers, had meticulously planned how I wanted delivery to go and I was determined to stick with it. My point in including these details is because I was doing everything I could to avoid a C-section. Statistically, if you are medicated and are in labor for longer than is convenient, doctors can push a cesarian. There’s less liability and it saves time. The ironic thing about my birth plan is that it was planned to avoid the very thing that might have saved our daughter – having a C-Section. 

Had HSV been included on the extensive list of other STI’s and STD’s that women are tested for during initial OB appointments, it is very likely that I would have known that I was a carrier. I say likely because there is a high false positive rate for HSV serology tests along with a high rate of positive asymptomatic carriers. As of today, contemporary medical practice depends upon its patients having physical and/or visual symptoms to determine whether to test for HSV or not. I have never had any symptoms or anything that would have prompted me to seek medical attention and/or ask to be tested. Instead, I found out that I was HSV-2 positive through the death of my daughter. I would never know otherwise.

Medical protocols aside, I had never even heard of Neonatal Herpes. I’m an educated woman, read every baby book, went to every medical appointment required in the many months of prenatal care. Not one single baby book or pamphlet out of all the baby books and other educational literature that I read to prepare for our daughter mentioned a risk of neonatal herpes. Not one. My doctors never mentioned neonatal herpes. It is detestable that not only did it take my daughter’s life to learn that I carried this deadly virus but that it was a risk to be aware of to begin with. WHY? Why aren’t we preventing this when we have tests to help? We should be doing more, It is unjustifiable that I, along with other mothers both knowing and not of their status, am having to ask this.

WHY? Why aren’t we preventing this when we have tests to help? We should be doing more, It is unjustifiable that I, along with other mothers both knowing and not of their status, am having to ask this.

After three torturous and grueling days in the Pediatric Intensive Care Unit where our daughter was kept alive through life support, the doctors gave us our daughters’ diagnosis. Neonatal Herpes. They told us that statistically a baby dying from herpes is comparable to being struck by lightning twice in one lifetime and yet it happened to us. It is remarkable how quickly a statistic becomes personal when you are a part of the data. Suddenly something that was once so far away from your life’s orbit falls into existence with the force of a meteorite hitting planet earth. It’s explosive. 

 Our daughter’s diagnosis was not made known to us until 30 hours after she was admitted to the PICU for seizures. She had exhibited symptoms prior to the seizures but none that deviated enough from the norm to raise alarm. Typical symptoms of Neonatal Herpes are lethargy, slow weight gain, rapid breathing or difficulty breathing, jaundice, blisters on skin, and irritability. If you have had a newborn, you can see just how easy it is to mistake one thing for another. In our case, our daughter exhibited slow weight gain and in retrospect, lethargy. However, we were taking her to the pediatrician every other day to be weighed and examined and therefore assumed everything was okay. The doctor wasn’t alarmed so neither were we. Slowly she began to gain weight and aside from being a challenge to wake up for feedings, she presented as a typical newborn. 

It was around day 25 that I began to suspect something was not right. Several times while holding her to calm her from fussing, she would tense her entire body and turn a scarlet red. Her cry changed to a lower vocal range. It was alarming but our baby nurse said it was gas and it truly did look like that. Now knowing that the virus attacks the brain first, I can only assume that she was experiencing a pain that no adult could endure. This is what haunts me most. 

The day after a second episode of the body tensing and unusual but temporary change in skin pigment, she developed raspy breathing. When we brought her to the pediatrician, she examined our daughters’ eyes and immediately told us to take her to the ER and not to stop for any reason. This would be the last time I held my daughter, free from tubes and monitors and tears. A day and a half later, my husband and I, along with my parents held her as she took her last breaths. 

Writing our story, our daughter’s story, for others to read is an act of courage and I am doing it for her. There is no justice that will right the loss of her life—of any life. Herpes virus is deadly and yet it has been allowed to spread and kill and ruin lives despite our knowledge of this. I do not understand how a virus that is so common has been allowed to continue to be consciously omitted from standardized STI/STD testing and, at the very least, from OB and pediatric education. I happen to be one of the “lucky” asymptomatic carriers but I will forever grieve the precious life of my child. 

TAKE ACTION TO HELP PREVENT NEONATAL HERPES

Herpes Cure Advocacy has launched a new Neonatal Herpes Task Force to provide support for families, engage with stakeholders, physicians, and scientists, and create change to protect Americans from neonatal herpes.

Click here to learn more!

Families, clinicians and professionals, public health policy, and any advocates for change are welcome.

Neonatal Herpes Task Force Kickoff Meeting

September 14th, 2022 @ 6pm EST

Register in advance for this meeting.

After registering, you will receive a confirmation email containing information about joining the meeting.


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