The dark cloud of cytomegalovirus: congenital cmv

The dark cloud of cytomegalovirus: congenital cmv

Cytomegalovirus and pregnancy


When I was 17 weeks pregnant I learned that I got into contact with the cytomegalovirus (CMV). (Which has either no symptoms or either just common cold symptoms).
A completely harmless virus for adults and children (unless you have problems with your immune system). However if coming in contact with the virus for the first time while being pregnant it can be extremely dangerous.

I felt my heart beat in my throath when I heard the news. It all felt surreal, like I wasn’t really there.

My gyneacologist told me not to worry, since the percentage of the baby catching the virus is really small.

And IF she catches the virus, the chances of her having any problems because of it were extremely small.

Percentages of the Cytomegalovirus and pregnancy

I am going to show the percentages for those interested. (Please keep in mind that these percentages can change over the years).

In 2% of pregnancies there is a cytomegalovirus contamination.

Of that 2% 30% of women who don’t have antibodies against the virus pass the virus to the baby.

(50% of that 2% do have antibodies and they have a 0.15% of passing the virus to the baby)

Of the babies who did get the virus passed on, there’s a 10% chance of them having problems due to the virus. eg; low birthweight, small head circumferance, enlarged liver or spleen, deafness, blindness..

Of those babies that are born with symptoms already there’s a 90-95% of them having lasting disabilities due to the virus. The other percentage who don’t show symptoms have that 10-5% chance of still developing problems later on. ( Especially hearing and developmental wise).

Since a lot of young children are carrying the virus it are mostly mothers with young children, teachers and nurses of young children who are at risk of catching the virus.

( taken from the dutch website https://tinyurl.com/y79e7j7s )

Stress and worries

However as protocol says, he told me what COULD happen. She could have trouble with her sight, deafness, have ulcers on her brain which could cause her not to walk, not to talk. She could also have problems with her liver or kidneys.

So, now you tell me HOW I should not worry after hearing all of that?

As if pregnancy isn’t hard enough doing it all alone without support of the father, I also had the emotional stress of the dark CMV cloud.

So I went and Googled. Something I shouldn’t have done since Google only shows the worst case scenarios. THANK YOU GOOGLE.

I got more and more stressed. I only read these horrible stories of poor babies being severely disabled, even with death as the outcome. Everytime that she didn’t move enough I panicked. I even had to take medication because do to all the stress I had mild contractions.

At my sisters wedding while i was 7 months pregnant, I started crying because I had stomachpains. I was just so scared that something would happen to her.

I had no time to enjoy my pregnancy, it was just too much with being alone and the cytomegalovirus. Looking back at it I regret worrying so much and not enjoying my pregnancy enough.

Time went on and her ultrasounds were always normal: she was growing well and didn’t show any abnormalities. So i was a ‘little’ reasured that it wouldn’t be that bad if something was wrong. However I kept having the feeling that something was off, but i brushed it off as just a fear. Little did I know it was my intuition speaking and it was correct.

 

 

Birth

I was 41w1d pregnant on the 22nd of November 2017 when I went in to get induced. After laboring for +22hrs without an epidural I ended up with an emergency c-section. Just my luck huh?

So at 41w2d , the 23rd of November 2017 at 19h02 my precious daughter was born.

Without revealing too much about her birth (which I will make another blogpost about) I will now stop my writing about my birthing process 😊.

When she was born she was born dysmature, meaning she was way too small and weighed way too less for her age.  She was only 48cm and only weighed 2.77 kilos.

Keeping the cmv scare in my mind I immediately knew something was wrong.

As I had been told what would happen once she was born: they tested her urine to see if she was affected by the virus. I would know the result a couple of days later. I tried to enjoy those precious first days but couldn’t help but cry and panic with every little twitch she did.

Since I had a c-section I was in the hospital for 5 days (or 6 I honestly don’t remember).
I Googled ‘dysmature babies’ and CMV,  and ofcourse Google said the most horrible things. ( I really need to stop googling stuff). Everyone around me however kept reassuring me that nothing was wrong, the nurses, the doctor, everyone was sure she would be fine.

Dark cloud

On the day that we left the hospital, while I was packing my bags, the pediatrician came in. I was alone since my mother and father were at home waiting until I called them to pick me up.

When she uttered the words ‘she has tested positive for CMV’ I felt something I had only felt once before (when my best friend died) I felt the ground move underneath my feet, literally. I am still sure that at that time the building collapsed underneath me and I got sucked into a huge gaping hole.

Not being able to breathe, not being able to see due to all my tears I tried and called my parents. Totally in panic I said she tested postive, I heard a deafening silence on the other side of the line. They rushed to the hospital. In the meanwhile one of the midwives was calming me down.

I don’t remember her name but I will never forget how she looked like: she had glasses on, long dark brown curly hair in a ponytail, with her baby hairs curled up. She looked like an angel, and in that moment, she was. I hope she reads this one day, and that she will know how much she meant to me eventhough we didn’t know eachother. She held my hand while my whole world was crumbling down.

Home we went

I had no choice but to pick myself up. I hugged my parents and kissed my beautiful daughter.

My gyneacologist came in to give me the clearance to go. I could see in his eyes that he had heard the news, I saw defeat in his eyes.

I had been going to him for years, so I had always felt comfortable with him. He told me that he heard the news and I could hear that he had trouble saying that.

Later on I learned that Daya was the first baby he delivered that had congenital cytomegalovirus

So home we went, on our way to an adventure I did not really expect, only feared.

My daughter, after hearing about her diagnosis and before heading home.

 

This was part 1 of a series about Daya’s CMV story, stay tuned for part 2 which will be about life after the diagnosis, What now?!

Part 2 can be found here : Cytomegalovirus: What now?!


Thank you for reading,

-x Gitte

 

 

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