(Image of me, Lisa Saunders, holding my daughter, Elizabeth, born with congenital cytomegalovirus.)
Telling
a Mom Her Newborn May Have Hearing and/or Vision Loss
By
Lisa Saunders
Part
1 – What is CMV, Learning the Diagnosis & Move Forward
The
leading cause of hearing loss, after heredity, is congenital
cytomegalovirus (CMV). Congenital CMV is also a cause of vision loss.
The CDC
states, “About 1 in 200 babies is born with congenital CMV
infection. About 1 in 5 babies with congenital CMV infection will
have birth defects or other long-term health problems.” In October
2023, New York State began testing every newborn for CMV for a
one-year newborn screening pilot program. This
means that mothers of newborns who tested positive for CMV, have the
potential to hear that their
child may develop hearing loss and/or vision loss as they age.
Presenting
the possible outcomes of congenital CMV (or cCMV) to a mother is
difficult news to deliver, and even harder for a mother to process.
When my daughter Elizabeth was born in 1989 with obvious microcephaly
(small, damaged brain), the following day I was told by a
neonatologist that Elizabeth had tested positive for congenital CMV.
I learned I had contracted CMV while pregnant, most
likely from the toddlers who were under my care
and passed it on to Elizabeth while she was developing in my womb.
(If
only I had known to reduce my chances of getting CMV by being more
careful when handling the saliva and urine of young children.)
The
doctor said, “Of all the cases I've seen, Elizabeth's is the worst.
She will never roll over, sit up, or feed herself. Her color is bad,
her cry is strange, and she startles violently whenever people touch
her. I don't know if she can see or hear.” That was 35 years ago,
but I remember that conversation as if it were yesterday.
According
to the article, “Improving
the way healthcare professionals deliver different news to families
during pregnancy or at birth: a qualitative study,”
receiving
news of a child’s learning disability “had a significant impact
on parents’ emotional and mental wellbeing. They remembered how
professionals described their child, the quality of care and
emotional support they received. The process had a significant impact
on the parent–child relationship and the relationship between the
family and healthcare professionals.” Delivering this news is
“challenging for some healthcare professionals due to lack of
training” (Mugweni, et al, 2021).
The
National
CMV Foundation
states,
“Hearing problems occur in up to 75% of babies with symptomatic
congenital CMV... the hearing loss will progress throughout the
course of their lives.” In addition, “approximately 10-15% of
asymptomatic babies may experience hearing loss, which can occur at
birth or later in life.” Regarding vision, “Vision problems or
loss may occur in 10-20% percent of children with symptomatic
congenital CMV. The types of vision abnormalities are diverse and
include scars on the retina and eye muscle tissues. Cortical vision
impairment (CVI) or cortical blindness, where the brain improperly
translates signals from an otherwise healthy eye, causing permanent
visual deficiency, may also occur.” In addition, “Minor vision
loss may occur in one to two percent (1-2%) of asymptomatic babies,
usually caused by small scars or abnormal pigment layers on the
retina that may be present at birth, or may occur later during
childhood.”
Andrew
Handel, MD, a Pediatric Infectious Disease physician at Stony Brook
Children's Hospital, said,
"Disclosing
a new diagnosis of congenital CMV can be difficult in many ways. The
conversation entails delivering some upsetting news, but also being
very clear about the optimism and hope for the future. Most parents
have never heard of CMV, so processing a complex and uncertain
diagnosis can be challenging. There's so much we medical providers
don't know about cCMV, that it can be difficult to provide accurate,
meaningful information. As a result, the medical community has a long
track record of minimizing the conversation or avoiding it
altogether.
Thankfully, due in large part to the work of parent advocates,
there's growing momentum toward national cCMV awareness among
providers and the general public. These conversations will always be
difficult, but meeting families with compassion, humility, and a
commitment to ongoing communication goes a long way. Feedback from
families who have lived through these experiences is invaluable
toward improving these conversations. " (Dr. Handel is Primary
Investigator, with
Sharon
Nachman MD,
of
PROACTIVE NYS, an
NIH-funded long-term follow-up study of young children with
congenital CMV: www.proactivenys.org,
andrew.handel@stonybrookmedicine.edu).
In
my new memoir, "Had
I Known about CMV: From Shock to Law,"
I decided to reveal my true thoughts after I received Elizabeth’s
diagnosis and her predicted future. At the time, I didn’t tell my
family and friends that
I wished I were dead and of
the various ways I told God He could kill me so it would look like an
accident. When He didn't kill me, I prayed He would help me love
Elizabeth – and that He did – in abundance. At first, I felt
nervous sharing such personal thoughts with the world, but when I
began hearing from mothers about their experience receiving the news
that their child might be DeafBlind,
I was glad I did.
One
mom, who gave me permission to share her story told me
that she was so exhausted caring for her newborn and overwhelmed by a
new diagnosis her daughter received when she
was
eight months old, that she bought two bottles of sleeping pills and a
bottle of wine and drove to a parking lot to end her life. She was
saved because her husband kept calling her and leaving messages,
asking her to come home and help him take care of their daughter.
Initially, that was the only thing that kept me going, too –
knowing that my kids needed me to take care of them. Most of us moms
don't share our struggles with those closest to us because we don't
want to worry those
around us.
We may not want them to know we’re drowning or that we feel guilty
for passing something harmful onto our children.
The
unconditional love I grew to feel for Elizabeth was so powerful and
fulfilling that I can't imagine who I would be today if I didn’t
have the chance to raise her for 16 years. Although the doctor who
gave me her initial prognosis was right, she never did "rollover,
sit up, or feed herself,” and she was considered “deaf-blind,”
he failed to predict that for several years in a row, Elizabeth would
receive the "best smiling" award at school – making me so
proud when I hung her certificates on our refrigerator.
Although
the mom who attempted suicide is fine now and lovingly raising her
daughter, her story prompted me to ask moms how they received the
congenital CMV news and what helped, hurt, or could have been done
better. Although congenital CMV is a leading cause of birth defects,
most moms have never heard of it until our baby gets the diagnosis.
One mom said that when she got the diagnosis, she thought her
daughter had something like the flu – something she’d recover
from. She said it took several compassionate nurses to help her
realize that her daughter could be normal – or she could be
nonverbal, blind, deaf, unable to walk or move. She said, "A lot
of questions stemmed from family members when they Googled it. They
thought I had been promiscuous or had done IV drugs. I got blamed by
my family and her dad’s family for contracting CMV."
I
hope my story, and the stories that follow, will help the medical
community learn how to better deliver a distressing diagnosis to a
mother. For example, it’s important to remind the mother that her
child is not a tragedy – but a lovely little person whose life
still has purpose and meaning. In Part 2 of this article series, I
will share perspective from the National CMV Foundation, resources
for parents, direct quotes from families from our Facebook group and
more! Stay tuned for the next edition!
In
the meantime, for more information about congenital CMV and
deafblindness, contact the New York DeafBlind Collaborative (NYDBC)
at nydeafblind@gmail.com. For specifics on statistics, Susanne
Morrow, NYDBC Project Director, suggests checking the national
statistics from the annual Child Count. This is a summary of all
children registered with the federally funded State DeafBlind
Projects. The most recent report from 2022 is available on the
National Center on DeafBlindness website: Primary Identified Etiology
| 2022 National Deafblind Child Count Report.
Lisa
Saunders
Lisasaunders24@gmail.com
*****************************************************************************************************
PART
2
National
CMV Foundation Program Director, Amanda Devereaux RN, BSN, herself
the mother of a child with congenital CMV, said, “This can be a
hard diagnosis to live with. There is uncertainty, fear, anger, and
regret. For most people it does get easier. You will learn to love
your child exactly as they are, and you will learn that although your
parenting journey is different than most, it is no less valuable or
joyful. You are doing exactly what every parent should do – parent
your individual child, exactly as they are, and not how you expected
them to be. I think it is important to focus on the short term, at
least at the beginning. I would ask myself, ‘What can I do for my
child today?’ I would not allow my thoughts to drift too far into
the future. It took time, practice, and counseling to be able to
focus on the short term. Over time, I have been able to extend how
far I can look into the future without feeling overwhelmed. You will
get there. It just takes time.”
The
National CMV Foundation has a very simple, but comforting flier for
parents: “CONGENITAL
CMV: SUPPORT AND NEXT STEPS,
which includes testimonies from parents, such as Jami, who said,
"It's OK to be broken and cry, and ask ‘why us?’ But at the
end of the day your baby is perfect. Finding support from families
similar to mine helped me remember that my child is perfect…” The
National CMV Foundation hosts “Care to Talk,” a recurring, online
support group for families that discusses life “before, during, and
beyond congenital CMV.” If you would like to try the Foundation’s
“Care to Talk”, pre-registration is required. For questions
and/or to pre-register, please contact Amanda Devereaux at:
amanda.devereaux@nationalcmv.org.
Several
moms I polled through a CMV Facebook group have offered to share
their experiences to help the medical community learn how to deliver
an upsetting diagnosis:
"I
think it's really important that doctors realize their words will
stay with that mother forever. It may just be a normal day at work
for them, but for us, it’s a moment that changed our whole lives.
It's important to give clear, accurate information on cCMV, and
though, yes, you may have to touch on the worst-case scenarios,
statistics also say most children will have mild effects."
"I
got a phone call from the infectious disease nurse who I didn't
know, and it was terrible. I would say call people into their family
doctor’s office (somewhere familiar) and maybe have the infectious
disease nurse talk over the phone there.”
"I
was on my own, husband at work, baby five days old, in NICU. I was
told: ‘If your baby survives she will be deaf, blind, brain dead,
in a wheelchair, like a cabbage.’ After that, I never heard
another word.”
“I
think doctors are too quick to only give the clinical list of things
that are wrong and fail to tell the good sides. Even when giving
horrible news, you can share that there will still be joy. My
severely affected son was predicted to be 'blind, deaf, and
retarded' by one NICU doctor and 'a vegetable' by another. While the
first set of predictions were technically true, my son was still a
happy, joyful child. He laughed and smiled constantly, loved to
swim, listen to music, sing, kick, snuggle, play with rattles, and
he even enjoyed riding roller coasters at Disney. Yes, he had a lot
of daily medical needs. Yes, he faced life or death medical
situations annually and passed away at age six. But his life was
still valuable and worth living. Finally, all medical providers need
to know that CMV is extremely common in children, and they are not
putting themselves at unusual risk if they treat our children."
***
One
mom said the poem, “Welcome
to Holland,''
written by the mother of a child with Down syndrome, Emily Perl
Kingsley, was very helpful. My friend, singer/songwriter Debra Lynn
Alt, wrote a song to help us mothers put words and music to our
feelings. She titled it, "Had
I Known (about CMV),"
and I listen to it often. Parents
may also benefit from reading articles such as,”How to Cope When
Your Unborn Baby is Diagnosed with a Birth Defect” (Children’s
Hospital of Philadelphia,
2019). Parents can also contact the National
Congenital CMV Disease Research Clinic and Registry,
spearheaded by Gail J. Demmler-Harrison, MD, Attending Physician,
Infectious Diseases at Texas Children's Hospital and Professor,
Department of Pediatrics, Infectious Disease Section, Baylor College
of Medicine. Known affectionately as Dr. Gail by her CMV patients and
their families, she has over 40 years of experience in congenital
CMV.
When
Dr. Gail was interviewed for a webinar hosted by The American College
of Obstetricians and Gynecologists
on presenting the diagnosis of congenital CMV to a family, she said,
“First, I begin with, they’re not alone. My families think they
are the only ones on the planet with a baby with congenital CMV
because they’ve never heard about it. So, I explain that CMV is
actually a very common virus. Most people will be infected with it.
It’s usually silent – that’s why they don’t know about
it…most babies who are congenitally infected with CMV will actually
have little or no symptoms." Dr. Gail says the first few months
are the hardest “because they often need to do evaluations, blood
tests, imaging tests, hearing tests, eye exam, consultations...all
during a time when they’re processing this news about their baby
and also exhausted from being new parents. So, I reassure them that
... the first few months are the hardest and it does get better as
their baby grows” (Compassionate
Conversations: Congenital Cytomegalovirus,
June 14, 2024).
“Moms
with children less affected by congenital CMV shouldn't be any less
important than those whose children show signs of cCMV at birth,”
said Kara Russell, New York National CMV Alliance Co-Chair. “As a
mother who did not find out her daughter had congenital CMV until she
was five years old, we are considered ‘lucky.’...I felt
completely dismissed by everyone we saw, and was repeatedly told,
‘Well, it could be worse. Be thankful it's only her hearing.’ It
was as if we should be grateful, that we didn't have the right to be
angry or to grieve the loss of her hearing, that it didn't matter
that she was struggling in school, has balance issues that cause
injury, has behavioral issues, will be undergoing CI surgery, and
that the rest of her life has been altered by something we were so
completely unaware of.”
In
my memoir,
“Had
I Known about CMV: From Shock to Law,”
I
share how several strangers comforted or inspired me and how I
learned to deal with the shock of Elizabeth’s profound brain damage
by journaling, searching the Bible for relevant Scriptures, and by
taking anti-anxiety medication. One Scripture that helped me move
from deep depression to eventual joy was, "Perfect love casts
out fear" (1 John 4:18). I learned to dwell on just loving
Elizabeth and not her diagnosis and prognosis. Although I always
prayed for a miracle, I also learned to just concentrate on caring
for Elizabeth one day at a time, just as her nurses suggested before
we brought her home from the hospital: “don’t worry about
tomorrow, for tomorrow will bring its own worries” (Matthew 6:34).
You can read my initial thoughts and how I began recovering from them
in the “read sample” portion of the
ebook
or
paperback
version.
Although
Elizabeth died in 2006 at the age of 16 during a seizure, I feel like
she is still with me. She is my "Tiny Tim" who would say if
she could, "And God bless us, everyone!"
For more
information about congenital CMV and deaf-blindness, Susanne Morrow,
Project Director, New York Deaf-Blind Collaborative, suggests
checking the statistics
from the National Center on DeafBlindness. She said,
“This is the national child count that we report our data to every
year” (click on “Primary
Identified Etiology | 2022 National Deafblind Child Count Report”).
About
Lisa Saunders
Lisa
Saunders was the mother of Elizabeth, born with a severely damaged
brain from congenital CMV in 1989. Although Lisa was a licensed,
in-home childcare provider, a church nursery volunteer and the mother
of a toddler, she was unaware her activities put her at increased
risk for CMV. Lisa helped pass CMV legislation in both Connecticut
and New York and was the recipient of the National CMV Foundation
Spirit of Advocacy Award in 2023. Lisa is currently walking 360 miles
across the State of New York between Albany and Buffalo with her
husband, Jim, leaving behind Stop CMV rocks to help raise awareness.
She is a PAC-B
TV talk show host and is on the Advisory Board, as a Parent
Advocate, of PROACTIVE
NYS, the follow-up study of New York infants with congenital CMV,
and is a member of the New
York DeafBlind Collaborative,
Expert Advisory Council.
