Congenital CMV Threatened Her Life - and One Baby Girl Triumphed

Over the years, many parents of the babies I cared for were inspirational to me - parents whose children had severe disease. One especially memorable mother was a bright, busy, young lawyer in Houston. She caught cytomegalovirus infection from her two-year-old toddler. It’s a common way for pregnant women to acquire the virus. The young child gets sick with something like a cold, and the pregnant mother acquires the viral infection that is devastating for her fetus. CMV acquired in utero usually leads to overwhelming, ravaging disease which leads to severe consequences.

For this fearful mother and her fetus, two intrauterine procedures were performed to remove fetal ascites - fluid in the fetal abdomen from liver dysfunction - and her baby girl was delivered prematurely at 35 weeks to be evaluated for presumed congenital CMV. After her birth, the baby, Catherine, was admitted to the NICU and we examined blood counts, liver function tests, brain scans, spinal fluid exam and cultures, retinal exams, and hearing tests.

Even though Catherine’s symptoms were relatively mild, she had evidence of active infection throughout her entire body. She had low platelets (blood-clotting cells), hepatitis (liver inflammation), meningitis (spinal fluid infection), and evidence of retinitis (severe eye infection). Unfortunately, she was born with bilateral nerve deafness. If her congenital infection was allowed to proceed untreated, she would be severely affected and end up with significant neurodevelopmental handicaps, global developmental delay (what used to be called mental retardation), and blindness (in addition to her deafness).

At this time, a pediatric infectious diseases specialist at Texas Children’s Hospital (TCH) had just begun a phase two NIH clinical trial of ganciclovir, a drug thought to be effective in the treatment of CMV. At that time, proper drug dosing needed to be determined, and this drug at a higher dose was intended for babies with central nervous system involvement, just like my little patient. Catherine qualified for the trial, and her parents consented eagerly and with great hopefulness. I took care of their daughter during the eight weeks of her ganciclovir therapy.

Because of infection risk, her parents chose not to insert a central venous line, so Catherine required many IV insertions over those eight weeks. We checked her lab values for drug toxicity, followed her growth and liver function, adjusted feedings, adjusted drug dosing, and updated her parents daily. There were several dreadful IV mishaps (infiltrations of fluid) into her forehead and the back of her hand. Fortunately, these all healed well.

Twice the drug dosage had to be altered or held because of kidney toxicity or white blood cell abnormalities. As expected, her mother needed personal attention and patient explanations throughout this entire ordeal, but she coped with her infant’s illness amazingly well. To me, she seemed calm and inquisitive. (Later, she admitted to me that during this time she was really a “nervous wreck.”)

This mother preferred to express her breastmilk for her daughter’s feedings, and since it was culture positive for CMV, we all worried about possible viral transmission via the breastmilk. Our hope was that the baby would receive more maternal antibodies against CMV than she would receive any virus itself from her breastmilk, but no one knew for certain. 

Her treatment was a tremendous success! Eight long weeks later, after ganciclovir therapy was completed, Catherine was found to be completely free of the CMV virus. Because her hearing loss was identified early, and she was fitted with hearing aids around four months of age, she developed language skills normally. From the time of her birth, both she and her family learned to sign.

When she was about a year old, Catherine’s mother brought her up to the NICU one afternoon for a visit (after an audiology appointment). She wanted to say hello and was excited to report that her speech development was on target, and, moreover, that she appeared neurologically normal. We were both elated, and her mom took a picture of me holding Catherine, which I cannot find.

Two years later, after my family and I moved to another city, her father sent me a copy of the TCH volunteers’ magazine, The Watch. On the front cover was a darling picture of Catherine at about two years of age. She had sandy curls and was grinning with a lovely sparkle in her bright blue eyes. The article recounted her eight weeks of struggles through the ganciclovir trial and highlighted the research spearheaded by that pediatric infectious disease physician. Thankfully, young Catherine’s neurodevelopment remained normal despite her permanent hearing loss! Her thoughtful father wrote me a personal note thanking me for all my efforts, care, and concern. He certainly understood how much I genuinely cared about Catherine’s well-being and how hard I worked to ensure her complete recovery.

Just a few years back, I had the good fortune to reconnect with Catherine’s mother, who is now living in Austin. I learned that her daughter grew up attending all mainstream schools aided by assistive hearing devices. She and her family used a total communication method called Signed English (in which grammar and syntax are different from American Sign Language).

Catherine didn’t receive a cochlear implant until she was a teenager. Her neurodevelopment throughout childhood and adolescence remained normal except for deafness and mildly altered speech. Recently, Catherine completed a master’s degree from the University of Texas at Austin. She now works as a hazard mitigation planner for a firm in Houston. As an advocate for deaf people, she is passionate about bringing disabled perspectives to urban planning.

To their well-deserved credit, both Catherine and her mother became advocates for early CMV detection and treatment. Both of them gave numerous presentations around the country highlighting the impact of congenital CMV and the importance of early detection.

Catherine’s mother lobbied for legislation in Texas that makes CMV educational materials available to the parents of infants, expecting parents, and women who may become pregnant. These educational materials - in both English and Spanish - which describe the incidence of CMV, transmission routes, and available preventive measures, are currently in use.

She was disappointed that the additional mandate for targeted screening for CMV didn’t pass the Texas legislature at that time. However, progress has been made, and Texas is one of thirteen states that conducts targeted screening for congenital CMV - meaning that any newborn that fails their birth hearing screening exam will be tested for congenital CMV.

Her mother and I share the hope that one day universal newborn testing for congenital CMV will be routine.

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