1. Foreword
This
Viruses
Special Issue on Recent Cytomegalovirus (CMV) Research is dedicated to the patients
who have suffered CMV infection and to their parents, families and caregivers. We
are including as a Preface to this issue the insights of a young college student,
Kayla Dufrene, who suffered congenital CMV infection and contacted me and Dr. Roberta
DeBiasi, to interview us to learn more about CMV. As I was just returning to the DC
area from the 4th Congenital CMV Conference in San Francisco, I was particularly receptive
to her request. When we met Kayla, we were both impressed with her personal strength
and ability to cope with her disabilities and needed medical treatments. Despite it
all, Kayla has an exceptionally positive outlook on life, feeling even lucky. She
has not only coped, but has transcended her difficulties. I am proud to say that she
was on the Dean’s List (Figure 1) at Gallaudet University. Ultimately, her hope lies
in our fields’ efforts to develop a vaccine to prevent CMV disease in other children.
Her autobiography (in her own words) is our Preface. For those of us who work on the
virus and anyone interested in the consequences of CMV disease, it is a touching and
inspiring read (Figure 2).
Anamaris Colberg-Poley, Guest Editor, Viruses, Special Issue, Recent CMV Research
and Roberta L. DeBiasi, Professor of Pediatrics, GWU, Acting Chief, Division of Pediatric
Infectious Diseases, Children’s National Medical Center.
Figure 1
Kayla finding out that she made the Dean’s List at Gallaudet University.
2. Preface: Cytomegalovirus — Patient Monograph — Kayla Dufrene
Prior to writing a research paper for a college assignment, I never felt the need
to learn more about Cytomegalovirus (CMV). I didn’t know a lot about CMV, I just grew
up hearing my Mom tell doctors that it’s what I was born with. It’s the reason why
I have hearing loss, bad eyesight, and muscle problems in my legs, and also the cyst
in my brain. It’s also why I have had to endure two eye surgeries and surgery on both
my hips. When I was born, I was very sick. Besides having CMV I had an enlarged liver
(when the liver swells beyond its normal size) and yellow jaundice (yellowing of the
skin). I was very tiny and had to stay in the hospital for a month. The doctors told
my birth parents I would either die or not have a good quality of life. The decision
was then made to put me up for adoption.
Figure 2
Kayla enjoying the cherry blossoms.
It turns out I definitely DID want to know more about CMV. What are the symptoms?
Is there a cure? Is this a genetic disease? Is there genetic testing? How does it
affect my body? How does someone get CMV? Is it an STD? How is it diagnosed? Can I
get it later in life? Is there a vaccine for infants? Is there a test for CMV? Is
it contagious? Who can get CMV? How many people are diagnosed with cytomegalovirus?
How has it affected me? Do I still have it in my system? How does my case compare
to others? How will it affect me later in life? Could it affect my sex partner? Could
I really have died? Did it affect my birth mom? Is it a genetic disease and something
I have to worry about in the future?
After reading texts and online references on Gallaudet’s library webpage, I had a
foundation for my search and I was ready to start building from there. I developed
a desire for more knowledge and answers to a more of my questions. I learned that
CMV is a more popular subject than I thought. When I read about the impact it can
have on the family, it made me understand a little more why my birth parents put me
up for adoption. They couldn’t have known the extent that I would be affected yet
here I am, 19 years later, a student at Gallaudet University. I was very excited to
continue my search and learn more about the disease that has made me the person who
I am today.
My reading taught me that development of a CMV vaccine was a national top priority
and I wanted to learn more about the efforts that doctors and researchers are going
through to make a vaccine a reality. I know firsthand the effects of CMV: Knowing
a vaccine could have prevented a lot of what I had to go through and could prevent
newborns in the future from being affected by CMV I believe is worthwhile. CMV is
very common and the effects it can have on a child and the family can be very hard.
I know these from my own experiences of being picked on in school for wearing a hearing
aid and being “the girl who walked a little funny”. I was excited to read about clinical
trials that are testing potential vaccines for CMV. One of the articles explained
a clinical trial to develop a vaccine to prevent CMV among mothers and infants. The
possibility of a vaccine is very real. CMV has affected my life from the surgeries
to the teasing in school and the thought that a vaccine could have prevented all of
that is mind-boggling. My life could have turned out differently.
My reading sparked my interest in interviewing someone knowledgeable about CMV research
and disease. The deadline for having an interviewee was quickly approaching. I thought
long and hard about where I could find someone whom I could interview. I then thought
that since CMV is found in babies, maybe I should ask a pediatrician. I found out
that the Children’s National Medical Center was just a few metro stops from Gallaudet
and I was lucky to identify both a scientist (Dr. Colberg-Poley) and a doctor (Dr.
Roberta DeBiasi) who focus their careers in this very area. They were both more than
happy to meet with me. On the day of the interview, I was really nervous and wanted
to make sure I had everything I needed prepared. I explained to them that I was writing
a paper on a topic that had to relate to me so I chose CMV. I told them how I was
born with CMV and of how it was the reason I had two eye surgeries when I was a kid,
a hip surgery on both hips, and why I wear glasses and a hearing aid. They were thrilled
to have me there, eager to share their knowledge about CMV, and just as excited to
meet and speak with me as I was excited to meet with them.
Dr. DeBiasi shared that in her entire career, she had never met someone as an adult
who had been diagnosed with CMV as a baby. She said it was a good experience for her
and an honor to meet me. I shared many of my frustrations, such as the fact that no
one figured out I was deaf until third grade, and I was able to ask if I born deaf
or if it was detected late. I learned that even though the virus is latent in my body
(just like anyone else who is infected with CMV at any time in their life); it is
not something I have to worry about when I have a sexual relationship or children.
I learned that it is not a genetic illness, and not something that I am going to pass
on to my children genetically. I also learned that it is hard for doctors to accept
that there are diseases they can diagnose, but for which they can’t do anything about,
and they want to help change that.
The one big thing that I took away was that I’m going to be okay and I do not have
to stress about my future like wondering if CMV was going to affect my future children.
I also realized that, when my birth mom put me up for adoption, she couldn’t have
known what the future held for me. I’m glad that she’s okay. My adoptive mom did a
very brave thing of adopting a baby that she knew was sick and never bat an eye and,
over the last 19 years, I have not once heard her complain. Hearing Dr. Colberg-Poley
and Dr. DeBiasi describe how there are even worse possible outcomes for people with
CMV makes me feel extremely lucky. Something so small created a lot of problems for
me growing up but it has made me a stronger person and more understanding of other
people who have other problems. If it wasn’t for cytomegalovirus I wouldn’t have hearing
problems and I wouldn’t be at Gallaudet University and I never would have had the
chance to find out all of this information about CMV.
Doing the interviews was the most beneficial thing to me because I have never had
anyone to answer my questions. I was not sure where my search would lead me and what
I would find out. I have always lived with the fear of not knowing how Cytomegalovirus
would affect my future. I have always had questions like: What are the symptoms? Is
there a cure? Is this a genetic disease? Do I still have it in my system? How does
my case compare to others? How will it affect me later in life? Could it affect my
sex partner? But I never had any answers. Now I have all the answers to all the questions
I have ever asked. The search was hard and stressful but I’m glad I had the opportunity
to finally learn about CMV. I have now made contact with people of whom I can ask
questions that may arise later. During the interviews I learned things that I could
not get through any article or any book and I got real answers. It’s amazing that
something as small as a tiny virus could have such a huge impact and effect on my
life.
After my reading and interviews, I left feeling much more knowledgeable about CMV.
Dr. Colberg-Poley and DeBiasi answered all of my questions and made me leave with
a new-found confidence. I’m going to be okay in the future and so will my kids. CMV
affected me as a baby and growing up it caused me a lot of problems, but it’s because
of having Cytomegalovirus that I’ve had the experiences I’ve had and why I’m at Gallaudet
University. When I started my research, I was not sure where it would lead me or what
I would find. I have learned a lot about the virus and a lot about myself and just
because the past was tough, it doesn’t mean the future has to be.