CMV Virus: A Story of Loss and Hope and Love

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medical termination CMV (cytomegalovirus)

Today I have the honor of sharing a beautiful, yet heart-wrenching story. This family became pregnant with a beautiful baby girl. Unfortunately, they were quickly faced with a devastating choice. Their baby was infected with CMV (cytomegalovirus)… 

If you are interested in sharing your story of termination for medical reasons, please contact me via email.

To read more stories and our full journey with our trisomy 13 diagnosis, please go to this page –> Trisomy 13 and Termination for Medical Reasons

I am sitting here in a waiting room to get a second trimester abortion. There is one other sad woman in here with me. We avoid each other, with our heads in our phones sitting in a sad silence.

I never thought I would be doing this. I have struggled for the last five years of my life to get pregnant, fertility treatments, flying across the world, twice, just for the chance of maybe conceiving a baby. When I got pregnant with this little girl it was one of the happiest moments of my life.

I will never forge the joy at my gender reveal party when I saw that pink. I was overwhelmed with happiness. Is this for real? How did my life end up so perfect? A big brother, and now a little sister, to make our family complete. It was all we needed, we thought.

Throughout the pregnancy I felt uneasy, so worried about the Zika virus. Buying all of the mosquito killing protection devices out there. Which ones are rated best on Amazon? That’s the one I got.

And at one point early in pregnancy, I caught a terrible ‘cold’ and was very sick for 10 days. I had caught it from my toddler son, who had battled a three-day fever and then a week of sickness. Just a cold, we assumed.

At my 20-week ultrasound, where I was supposed to be beaming with happiness from seeing our healthy little girl moving around, all normal and intact, we received some different news. We even brought our son with us, to share in the good news of his healthy sister. “Look! There is your baby sister’s head, there is her heart!” “Isn’t it amazing!” “Yep, she’s definitely a girl, yea!”

First we realized that the ultrasound was taking an unusually long time. She had to put us in many different positions to get good views of the heart, etc. I was just expecting her to say, everything is fine! But as the minutes passed, my heart sank. I knew something was not right.

Once the doctor came in, she agreed that there where some abnormalities seen in the baby’s intestines. “Lets see you in a month, and we’ll see if it gets better”. This just didn’t sit well with me. I went and visited a friend who was an ultrasound tech of 36 years. “I’m sorry honey,” she said. “I am definitely seeing the fluid and dilatation, and I’ve actually never seen this before.”

I learned what a perinatologist was pretty quickly and called to make an appointment with one as soon as possible. “Is there any way I can get in right away?” Luckily there was a cancellation the next morning. The doctor discussed what we were seeing in the intestines and what it potentially meant.

“Most likely it will clear up, but if not it could require surgery.”

“Did you get a high fever in your pregnancy?”

I explained that I had had a bad cold with a slight fever that lasted 10 full days in the beginning of my pregnancy, and that my son was sick too. “It’s probably nothing.” He said, and shrugged it off. Do you want an amniocentesis? “Yes, I said, as soon as possible.” And he got one for me the next day.

Whatever this could possibly be, I wanted to know and exclude and gather as much information as I possibly could to help this baby girl whom I desperately wanted so badly, and had been dreaming and planning for and had already brought me so much joy. I wanted to know the full extent of what I was dealing with.

The first diagnosis was that obstructed bowel was most likely causing the fluid and dilation in the intestine. I proceeded to become an expert on pediatric intestinal surgery.

 

medical termination CMV (cytomegalovirus)

I know the different areas of he bowels that could possibly be impacted, the types of surgeries per different areas of the bowel, what percentage of the bowel that would need to be resected to live a normal life, cause Short Bowel Syndrome (it’s 75% btw) vs. what percentage would most likely need to be removed with the information we were seeing in the ultrasound.

I read medical journals on fetal intestinal atresia of the small and large intestine. I knew the statistics of the outcomes of all possible surgeries involving the fetal bowel. And even when I ended up demanding and having a consultation with a pediatric surgeon, he first replied, “Wow you’ve done your homework”.

I was going to make this work for my little girl. What we were looking at was most likely a premature delivery with a 10-week NICU stay, with two to three surgeries. But, I could do this, we could get through that. ‘”If this is just an isolated anatomical intestinal issue, then overall the outcome is very good.” The surgeon told me.

I was feeling hopeful, and happy, for the first time since our ultrasound finding. Of course, in reality floating around in my amniotic fluid, and what was already happening to the fetus growing inside me, this was certainly not the case.

A few days past and then I received a phone call from our perinatologist. “I am so so sorry, but we found a very high viral count of the CMV virus in the amniotic fluid. This explains what we are seeing at ultrasound.” But what does this mean? After I hung up on Wednesday evening, I soon found out what it meant.

Before, research was leading me to hope, but with this terrible debilitating brain and organ-destroying virus, the outcomes are very highly catastrophic.

The amount of the virus she had in her amniotic fluid, the abnormalities we were already seeing at 20 weeks, all pointed in the one direction, high likelihood of brain and organ damage, and zero chance of normal life. She was severely infected with this virus and her body was already showing symptoms of it.

Just some of the terrible things this virus causes in fetuses; blindness, deafness, calcification of the brain, I.e. Brain damage and microcephaly, deterioration of organs, including cerebral palsy. There was a very high potential that she was looking forward to a life where she couldn’t move, talk, feed herself, see or hear.

My daughter who otherwise would have been normal and without a doubt BEAUTIFUL was facing a life of these potential disabilities.

That’s if she even lived through the pregnancy, where there was a 30% chance she would not, then high chance she might live a couple of weeks, and then if she did survive past this, she would face a short life of suffering with a variety of disabilities and maybe, might live in to her teens.

All medical professionals were shocked and saddened by this rare devastating virus that we caught. “We understand and support you 100% if you want to terminate.” “Most people would terminate.”

My cousin who is a doctor, “We totally support your choice to terminate. I have never heard of a child born with congenital CMV that was normal, they all have terrible disabilities.”

Another OB, “I would tell any woman, at any stage in her pregnancy to terminate if the fetus is infected with CMV.”

You actually can have CMV and not have a fetus that is infected with CMV, in that case they might not have symptoms. Unfortunately for baby girl she had symptoms and was infected with a super high viral count (7.7 million particles/ml).

As I am hearing this from specialists and professionals, researching it on medical journals, screaming and hyperventilating that I am even CONSIDERING this, one of my friend’s words really stood out to me. “Think about your son, how happy and full of joy his life is. Could you really take this away from him by bringing another child into the world that would require all of your attention and resources?”

If you are interested in sharing your story of termination for medical reasons, please contact me via email.

To read more stories and our full journey with our trisomy 13 diagnosis, please go to this page –> Trisomy 13 and Termination for Medical Reasons

And another friend’s words, “Think about how hard and painful life would be with even one of these disabilities. Imagine if you couldn’t move your head, feed yourself, move your body, couldn’t talk or communicate? What kind of life is this to live?”

If you have an older child and are going through something similar, these books are incredibly helpful to explain to them the loss of a baby and pregnancy:

We Were Gonna Have a Baby, But We Had an Angel InsteadSomething Happened

A. I had to look at the facts, there was a very high viral load of CMV in her amniotic fluid (7.7 million particles/ml) medical research stated that anything over 100,000 has a high potential of exhibiting devastating symptoms. And B. She is already showing intestinal abnormalities. Her body is already losing the fight.

According to research, these two factors show a high probability of devastating disabilities. Even one bit of research I found where they performed autopsies on CMV aborted fetuses, 100% of them that showed abnormalities on ultrasound had brain damage also.

Now that I knew these facts, my brain was telling me what I had to do. For her not to suffer, for my son to continue with a happy life, for our emotional and financial resources that would impact my whole family, my husband and I knew what choice we had to make. There was a problem though, my heart.

My motherly heart, my body, the little movements that I was still continuing to feel inside my womb. The tears flowed, and so began the fight between my heart and rational mind. My focus turned to my son, my love for him and for him to not suffer won out and is what brought me to the wonderful absolute angels that work at the Women’s Center I was recommended to.

It is what got me through the two-day ordeal. The hurtful last ultrasound scan, blood work, the tear jerking counseling sessions about the procedure, what to do with her tissues afterward (we choose to donate her body to CMV studies or other studies) what medication would get me through (anti-anxiety and pain meds).

The seaweed sticks they placed in my cervix so over night they could start dilating my cervix for some twisted form of labor. The risk that labor could start, my water could break, or infection could start. How to stop your breast milk if it comes in, “use frozen peas in a sports bra” she said.

Having to come in the next morning, sit in a room with other sad women, flicking our feet, twirling our hair, mind numbingly checking our phones. I don’t know their stories, but I did make some observations, one woman was with her daughter who looked 13, and the majority of the others in there was all very young too, teenagers or young 20s.

This facility is in a hospital. It is in a locked down portion of the hospital, where all doors are locked and they can only buzz you in through a camera.

Right when you walk in there is an intercom with a button that reads “police” because even in the most liberal area of the US where abortion is legal, the medical team and their patients need this kind of protection to keep desperate women and angelic providers safe and healthy.

Never ever ever in my life did I think I would be going through this, but here I am 37, desperately wanting to get pregnant, desperately wanting a girl, and having to choose the humane time to end her short, short life. But, all she knew was sickness. She was very sick from this virus, and it was already destroying her body.

Finally when my time came, the sweet angels took me into the Operating Room, bright lights, Lana Del Rey playing quietly in the background. The anesthesiologist (the only man I encountered at this centre) was young and gentle, and had a sweet foreign accent. He was soothing.

Next thing I knew, I was on the recovery bed, getting my vitals taken. And It was over. The horrible procedure that these amazing doctors and nurses had to perform for me and for her and my family was over and they were the ones that had to do it, I slept right through.

I call them angels because their jobs must be so difficult but they do it for us, for our rights, to not feel trapped within our own bodies, and to do what is right for our babies.

I left them with a thank you card. Saying thank you for giving my son a wonderful normal life, thank you for preventing my daughter from never knowing a life of suffering, thank you for what you do.

Now I am home recovering, physically and emotionally. Pregnant earlier today and now I’m not, just empty. No more kicking, no more movements, no more wondering if she is in pain and swimming around in a virus filled fluid.

My brain is ok with what I had to do, all of my doctors are in agreement with what I did, all of my family, friends are in agreement with what I did (those I’ve told). But my heart still aches and mourns for a daughter that I so so desperately dreamed of. She was going to be beautiful and smart and make my family complete.

But sickness can take anyone; it’s a sad reality. So I look at my precious boy, and I know we will move on. He’s been ultra sweet with me these last few days; he must know I’m suffering. Hugging me at just the right times and telling me, “Mommy I love you” it melts my heart. It was for you, for my babies, I whisper to him. I will get through this…

If you are interested in sharing your story of termination for medical reasons, please contact me via email.

To read more stories and our full journey with our trisomy 13 diagnosis, please go to this page –> Trisomy 13 and Termination for Medical Reasons

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mamasorganizedchaos

Hi there! I’m Katrina (aka Mama). I am a former engineer and chemistry teacher, turned stay at home mom and mom blogger. I have been blogging since 2015, and have taken my love of engineering and science, and tried to applied many of the same methods to my parenting adventure.

I have a huge passion for Babywise and prioritizing sleep for our children. I am mom to 3 (including one angel baby that had trisomy 13). A huge mission of mine is to share her story and legacy. I am a big believer in being real and doing what works for YOUClick here to subscribe to my weekly newsletter to follow our story. 

This blog is intended to be our story and our ideas- including successes and failures along the way. You can also find me published at Today Parenting, Her View From Home, and VitamedMD. Follow me on Facebook and Pinterest for more parenting tips and to hear more about our journey!

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