TESTIMONIAL

I am the mother of Emma, a young girl who had to face CMV since her birth… and before. She is now 7, happy to go to elementary school for the second year. Emma has a little secret which decided to share only with their best friends (who cannot note it): she can hear only by one ear. This is her special feature.

In the spring of 2013, my second pregnancy began and was well until the morphologic ultrasound exam (20th weeks’ gestation). ….That day should have been special since my first child, a 5-year- old boy, was with us to see her growing sister. However, the gynecologist asked my husband and son to leave us alone because she had to speak only to me. I did not understand well the words said by the gynecologist…but, like a nightmare, I heard that my girl was suffering because of heart troubles and the presence of ascitic fluid in her abdomen.

The most shocking words were that the cause was not clear and, even more dreadful, it was impossible to know the outcome and if the pregnancy would go on. In the next weeks and months, none was able to explain what was happening to our girl, which was the cause, and what to do… our life was continuously anxious and confuse. Numerous examinations were done in my blood and the amniotic fluid, but none answered my questions
Since I was CMV-seropositive, without IgM, all the doctors excluded a possible reactivation and subsequent transmission to the fetus, on the basis of the epidemiological data. Therefore, were all looking for other causes!

At the end of my pregnancy, the ascitic fluid was disappeared, presumably because my antibodies against CMV were increasingly given to my girl. Therefore, I delivered hoping that everything was fine, .

butUnfortunately, Emma was born with numerous petechiae, a low Apgar score, and a liver disease. Congenital CMV infection was diagnosed and intravenous antiviral therapy was given for several weeks.

After the long and difficult hospitalization, the doctors told me that the left hearing of Emma was probably lost. No more therapy was included in their scheme.

Fortunately, a friend who had had a primary CMV infection in pregnancy told me about Professor Nigro. After evaluation of the virologic and clinical findings, he told us that it would have been necessary to continue the antiviral therapy, to prevent a worsening of the hearing and possible psychomotor retardation.

With the helpful support of our pediatrician, but against the official therapeutic scheme, we started with a long therapy with valganciclovir until the age of 18 months. In the meanwhile, we followed up with much anxiety the psychomotor development of Emma, helping her with daily physical exercises.

As suggested by Nigro, we took Emma to some audiological centers. The only answer from the specialists was that Emma had left hearing loss but no interventions were indicated. However, in the audiological center of Piacenza, Emma received many examinations including an MRI, which was normal, and the development of the language was followed up for years.

Now Emma, in spite of having an only right hearing, is an intelligent and clever girl in any kind of intellectual or motorial activity, like she had to function both hearings functioning! In fact, her new

teachers are surprised when we tell them about the monolateral hearing of Emma…of course, she is aware that her right ear has not to be covered by something or her standing.

I feel the need of telling the Emma story to all doctors I meet because they all should understand how dangerous CMV could be, even in mothers with previous antibodies and considered protected. Each time, however, my painful experience is renewed because the problem is underestimated being considered rare, not needing a screening or any kind of diagnostic system to avoid the birth of children with deafness or psychomotor disabilities. Instead, many doctors during my pregnancy told me that it would have been impossible that CMV could cause the fetal damages shown by an ultrasound scan. Moreover, none told me about Nigro’s research and the possible use of anti-CMV immunoglobulins. Maybe now Emma could be not completely deaf in her left ear…The only answer the doctors agreed to say was that I might choose to abort.

To avoid the mention of a therapeutic chance not included in the official schemes, the doctors suggested the death of a fetus…it is what Hippocrates said?