Cousin's baby born with CMV- TW

celette482 · April 2016

we still aren't sure on full prognosis. Baby is definitely at least partially deaf. Her sister in law ( also my cousin) is 8 months pregnant and they are worried she was exposed too. I haven't seen them since December. Things are very bad around here though.

UponAStar16 · April 2016

Oh no, I'm sorry you and your family are dealing with that! I don't know much about it but I hope all end up as okay as possible given the situation. I might not be that smart and got confused by Dr. Google so, just wondering how do they think they were exposed?

LGW2015 · April 2016

oh my gosh, echoing the same sentiments as @UponAStar16 here. I read it's a virus transmitted through bodily fluids? And that most people who have it don't know they do? I've never heard of it before. That's scary. I did read that even if you have CMV, the likelihood of passing it to the baby is low (unless you contract it while pregnant? or something like that) because the virus is mostly dormant. Ugh Hoping the baby is ok and that your other cousin's baby is unaffected! So stressful

UponAStar16 · April 2016

Right @LGW2015 the body fluids thing is what confused me the most....

celette482 · April 2016

We don't know. We aren't sure when my cousin got infected. She doesn't remember being sick....

par_mach_kai · April 2016

Most Americans are immune. According to the CDC, an estimated 50-80% are infected by the time they are 40. It's generally only a problem for the fetus if you haven't been exposed prior to pregnancy. I got myself tested prior to pregnancy & I'm immune to it- you can have yourself tested through one of the online lab tests if your PCP won't order it. If you aren't exposed, you just need to practice safe hand washing practices (which you should be doing no matter what anyway). It's often passed through urine.

celette482 · April 2016

Good to hear about the test. I go to the doctor next week. I'll ask, if only for the sanity of my poor grandmother and other extended relatives. They're all in a tizzy, very worried about this baby but also my other cousin's and to a certain extent mine. Apparently my grandmother called my mom in a panic worried about my baby shower, which hasn't been planned or a date set or anything yet and probably wouldn't be until August or Labor Day, but I can see why having two or three babies born in the same family with similar problems would be a thing worth panicking about.

I got a few more details from my mom. Apparently the neonatologist at the hospital said all sorts of other things were wrong, like stroke at birth and calcification and problems with the prefrontal lobe, which really puts "deaf" into perspective (and I think that's what really scared them, the baby's grandmother [my aunt] is a speech pathologist, so they are more equipped than most to handle a child with a hearing deficiency). But the good news is that at the 2 week check up the regular pediatrician didn't see any evidence of more severe brain damage (according to my mom, a doctor herself, the sorts of things they were expecting would have shown up even at 2 weeks) and they went to a specialist in the city and THAT doctor said he didn't see any of the problems the original doctor had mentioned. So it looks like it might be only deafness, not blindness or severe brain damage. My mom wasn't sure what the time line for determining if she's a candidate for cochlear implants is. Until then, she's being raised in a family where several members know at least basic ASL and it sounds like she isn't looking at more severe problems.

Doesn't keep them from worrying about Other Cousin's baby, though.

booksandicecream · April 2016

I'm so sorry to read this

Hopefully the hearing loss is the only symptom and baby can live a normal life. Thankfully it was discovered early, so even if the hearing loss is profound, they will be able to intervene and baby should have normal language and cognitive development. My sister and I both have moderate sensorineural hearing loss and, with a few adjustments (and loud friends), have had almost no issues. FX that everything works out!

TheBeeCharmer · April 2016

Sorry to hear this. Hopefully there are no other complications for your family.

CaptainPhasma · April 2016

I'm so sorry to hear your family is going through this.

I work in health care and I definitely worry about this, I really should have myself tested for titers at a lab.

AshleyGemini24 · April 2016

My friend's grandaughter was born with CMV. They told her she wouldn't live past a few weeks old. This beautiful little girl is now 3. She has had a struggle in life. She has multiple seizures a day. She is partially deaf, and has minimal vision. But she is the happiest little girl, despite her illness. if you'd like more information about Gracelynns struggle with CMV look her up on facebook. The group is "Prayers for Baby Gracelynn".

618mom22boys · April 2016

*lurking from S16*

My 1st child was born with CMV. He was born symptomatic and need a platelet transfusion as birth. He is deaf in his left ear with a slight loss in his right ear. But you would never know, he is a healthy happy smart ass 16 year old now.

There is an antiviral that the baby can take to hopefully reduce the amount of hearing loss.

I am part of a great CMV group I can connect her with.

Here is some info I posted in another group about CMV:

It's called Cytomegalovirus, or CMV. It's is a member of the herpesvirus family, just like chickenpox. Coming into contact with the CMV virus is a common occurrence and is typically harmless to the general population. A CMV infection causes cold-like symptoms, such as a sore throat, fever, fatigue and swollen glands. These mild cytomegalovirus symptoms last for only a few short weeks and are rarely a cause for concern for healthy kids or adults.

It is important to note that the CMV virus can cause serious problems for people with weakened immune systems (immunocompromised) due to organ transplants, HIV/AIDS infection, chemotherapy, and specific medications, such as glucocorticoids, cytostatics, antibodies, and drugs acting on immunophilins.

The CMV virus can also cause severe disease in babies who were infected with CMV before birth (referred to as congenital CMV infection).

According to the Centers for Disease Control and Prevention (CDC), between 50 and 80 percent of people in the United States have had a CMV infection by the time they are 40 years old.

Once the CMV virus is in a person’s body, it stays there for life.

1 in 150 children are born with CMV. It is more common than Down Syndrome. Babies born with congenital CMV can have widely diverse outcomes, and it is difficult to predict with any degree of certainty their future health or developmental prognosis.

Babies born with congenital CMV may be born with birth defects and developmental disabilities, including:

Hearing loss
Vision loss
Mental disability
Microcephaly (small head or brain)
Intracranial calcifications
Lack of coordination
Cerebral Palsy
Feeding issues / Failure to Thrive (FTT)
Sleeping, behavior, sensory issues
Seizures
Death (in rare cases)

Babies born with congenital CMV can appear to be either symptomatic or asymptomatic at birth.

CMV is most commonly contracted through contact with the bodily fluids of a person carrying an active CMV infection. For pregnant women, women who might become pregnant, or women who work with young children, it is imperative to practice CMV precautions in order to avoid exposure to CMV. Do not share food, utensils, drinks or straws, do not put a pacifier in your mouth, avoid contact with saliva when kissing a child,and wash your hands after diaper changes, wiping your childs nose or drool.

Also some people think if you have already been exposed you are safe, which is also not true! You can have a reactivation at any time or catch a different strain.

For more info on CMV this website is great! https://www.nationalcmv.org/default.aspx

And a chart regarding CMV infection.

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