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Viability and Uncertainty

Monday, September 15th, 2014.  25w4d.

I know it’s been quiet over here, and partially it’s just been because life, as it will do, has become so overwhelmingly busy the past few weeks that it’s taken every last ounce of effort on my part to even keep in touch with people who call or email me.  It’s been cuh-RAZY.

The other part has to do with the fact that there are some things happening that I’ve been trying to process, trying to work through, and attempting to handle completely within the confines of marriage, but I’m finding that I – we – may need help.

And so, as I always do, I’m turning to you, my readers and the wide reach of the interwebs, for help.

First, let me tell you the story of how something totally common I’d never even heard of is currently possibly endangering our precious Jelly Bean…

*****

Nearly six weeks ago at our 20-week anatomy scan, the doctor said that everything looked great with the baby, just that she was measuring a bit small in a couple of areas, including her head measurement.  Since neither the husband or I are particularly large people, we, and the doctor, chalked this up to genetics and were told it likely wasn’t a reason to worry.

Since Jelly Bean fell below a certain percentile in her head circumference, however, we were referred to Maternal Fetal Medicine for a follow-up scan two weeks later.  Every indication was that with the better machines, two full weeks, and a different sonographer, baby’s measurements would probably show up at the second scan well within range.

Well, that wasn’t the case.  Baby’s head measurement was still small, although her brain looks perfect, and there was an echogenic or bright area visible in her bowel.  These two findings can be markers for all sorts of genetic abnormalities, Downs Syndrome, cystic fibrosis, or signs of infection, as I was told when I was ambushed by three perinatologists and a genetic counselor moments after my ultrasound ended.

I was stunned that this was such a big deal, but carefully weighed through the options presented to me and ultimately decided to have a more advanced genetic screening panel (Verifi) and an infections TORCH panel done that day.

The Verifi results came back around a week later, and all indications are that this baby girl has an extremely low risk for trisomies and other genetic issues for which I was tested.  This is pretty much in line with what my first and second trimester screening labs showed, as well, so I was relieved.

The TORCH panel also showed that I am not infected with toxoplasmosis, parvovirus (the human version of this strain is commonly called Fifth’s Disease), or the other infections on the panel.

Except one.  Cytomegalovirus, or CMV, is the one infection for which I tested positive.  The two-part testing showed that I have been exposed in the past, but also that I have had either a recent infection or a resurgence of an old infection.  CMV is one of the herpes family of viruses like chicken pox or shingles, and can lie dormant in your system after exposure for a long time.  Occasionally, pregnancy can cause it to reemerge, and many times without symptoms.

I had never heard of this infection before.  I’ve heard of toxoplasmosis – that’s the one you can get if you are in contact with the cat litter while pregnant, and I’ve heard of parvovirus because our dog had it when I was in high school – although I didn’t realize there were different variations that humans could also get – and not from dogs, from each other.  But CMV?  Never heard of it.  So why were these doctors talking to me like I should be terrified?

Well, upon researching on my own, I discovered that when a woman is exposed to and infected with CMV for the first time during the first half of pregnancy, there is a 60% chance her unborn baby can also get the infection, called Congenital CMV.  There’s currently no real treatment (other than one that’s being done on a rather experimental level), and the infection in the baby can cause a range of things from hearing and vision loss, to profound mental and physical disabilities, to stillbirth and infant death.

It can also cause nothing.  There’s just no way to know.

There are odds and chances and percentages, but again, no way to know if the baby does, in fact,  have the infection until birth, and no real way to know how this infection, should she have it, will impact her life.

At some point, while all this was happening, I reached 24 weeks – viability.  Except, in this case… is it?  It’s hard to say.  Either way, I’m amazed to have made it this far, and I hope and pray every single day that the little lady ninja-kicking my spleen on the regular will be strong and healthy.  She’s a fighter like her mama, that much I know for the sheer fact that she even exists.

*****

So what now?

Good question.  Upon doing hours and hours of research, I found a resource with a children’s hospital in Texas that specializes in CMV in infants and in pregnant mothers.  I found that there is a blood test that can sometimes help determine if this particular infection is more than six months old, or less.  The test isn’t exact, so it may be inconclusive, but it’s a risk I’m willing to take.  I had the labs run almost two weeks ago, and the results should be in soon…

From there, if I’m able to determine that I likely contracted the illness prior to pregnancy, I can perhaps worry a bit less.  If the test shows that I likely did become infected during pregnancy, then I will have to move forward.

Forward with what?

I don’t know.  All I know is that I’m currently being seen by a very small hospital Maternal Fetal Medicine department, and not even with the hospital chain I wish to deliver with in this area.  There are some insurance politics at play here, but I may have to force the issue and skirt around my OB’s office to see a more regional specialist.  From there, I hope to secure treatment through a doctor and hospital with a high-level NICU, because my baby will have to go through a barrage of tests after birth to find out if she has this infection, and if so, what – if any – symptoms she may be showing.

Another thing to consider is that there is that little experimental treatment that I mentioned before.  It’s not done regularly – my doctor here had never even heard of it and assured me that no one in this area would attempt it (how he knows that is beyond me…) – but it IS done, and with great success and little risk, actually.  I would like to find a MFM doctor who might consider it, and I’m willing to commit to a hospital over an hour away from my home to make that happen, risky though it may be to consider having to travel that distance in the winter to deliver.

On one hand, I feel like I have zero options – wait until the baby is born, have her tested, and plan your life at that moment around those results and whatever unpredictable events may occur thereafter.

On the other, I feel like there are so many different directions I can go to search for help – and I do feel that I need to search for help, because I feel that I’m very clearly only getting the one “wait and see” option from my current providers.

All of this uncertainty and feeling that I’m left to advocate for myself, and my baby, completely on my own is so reminiscent of what I went through while struggling with infertility.  It’s familiar, and disheartening at the same time.

I blame myself, although the doctors say there’s no way for me to have known I was exposed to this virus.  I think they don’t realize that I blame myself more so for finally, after so long, just being happy.  I forgot all about that other shoe dropping, and when it did, I was completely broadsided.

*****

So here we are.  Like every pregnant mother, I’m hoping and praying for a healthy baby with an easy delivery, but unlike every mother, I’m also hoping and praying with every fiber of my being that this baby will test negative for an infection that could make her little life very difficult, and worse, even very short.

The doctors tell me there’s no use in worrying, and that 60% of babies don’t get the infection.  They tell me that the abnormalities that showed up on the ultrasounds they’ve seen could be things that just correct on their own and may not be directly related to the infection at all.  They tell me that I may end up with a perfectly healthy baby who has a perfectly normal life.

I wish I could just blindly accept that, but for me, as it’s always been, I can’t just sit back and live with those what-ifs.

If there’s something that can be done, even on an experimental level, I’m going to pursue it.  This baby is due in roughly 100 days, which means that I have around three months to do everything in my power as a mother and informed patient to ensure that she is given every chance at a normal life.

So here we are.  A new normal, yet again.

Different, but so familiar.

And yet, there’s so much more at stake now…

But one thing’s for sure – I will never, ever give up.

*****

If you have experience with CMV during pregnancy, or have a child impacted by Congenital CMV, please let me know.  Also, if you have, or know someone who has undergone the experimental treatment for CMV on babies in utero with Cytogam, please reach out.  I am desperate for information on both of these subjects. 

Thank you!

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18 comments on “Viability and Uncertainty

  1. rainbowbabymaker
    September 15, 2014 at 1:08 pm #

    My heart dropped. I am at a loss for many words but for words of encouragement to keep fighting & don’t loose any hope. I would suggest a second opinion. Your situation completely warrants it & warrants doing as much as you can & talking to as many people as you can.
    This is completely unfair. You have gone through so much to have this little miracle and it would just be cruel for it to go wrong. I hope your baby’s born healthy & happy…I will keep following you and have you in my thoughts. I don’t have faith to say I’ll say any prayers but I’ll keep on following & offer any support I have. I’ve been through the worst case scenario and I’m just here xo

    Like

  2. Michele
    September 15, 2014 at 1:11 pm #

    Tracy, I’m not familiar with CMV, but I didn’t want to read and not respond. I hope there are other readers out there who know more and can provide you with the information (and reassurance) that you need, but in the meantime, and for the next 100+ days, I’ll be thinking many, many healthy-baby thoughts.

    Like

  3. Mel @ there is a higher hope
    September 15, 2014 at 2:33 pm #

    I’m sorry you’re having all these uncertainties and anxieties- praying so hard that your baby doesn’t have this infection. But you got one thing right- you two are fighters, for sure! Lots of hugs!!! XO

    Like

  4. cassiedash
    September 15, 2014 at 3:48 pm #

    Oh, Tracy. I am so sorry that you are having to go through this. I admire you for your resolve to get all the information you can and to do everything you need to do to in order to make the best decision for you and your daughter. I will be praying with my whole heart that your baby girl is born perfectly healthy and that you can have this weight lifted from your shoulders. xo

    Like

  5. Heather
    September 15, 2014 at 4:57 pm #

    Sending love and support and lots of hugs for what you are going through. Looks like you are doing your research thoroughly. Thinking of you.

    Like

  6. Theresa Voshel
    September 15, 2014 at 7:49 pm #

    Lots of thoughts and prayers headed your way!

    Like

  7. Hopeful Warrywart
    September 15, 2014 at 11:20 pm #

    hi there – i assume you’re referring to texas children’s in houston. i actually rotated through there as a medical student, and would definitely get in contact with dr. gail demmler to review your test results and see what she recommends. she’s been known to be very responsive to women in similar situations to yours! good luck! http://www.texaschildrens.org/Locate/Doctors/Demmler,-Gail/

    Like

  8. Elisha
    September 16, 2014 at 10:20 am #

    I met a woman just last week that goes to my church and she shared with me that she got cmv while pregnant. The doctors scared her and told her everything that could go wrong,etc. they even told her she should consider to abort. She prayed and believed that her baby boy would be okay. Today, despite the doctors report the only thing wrong with him is that he has hearing problems and wears a very small hearing aide 🙂

    Like

  9. Kristen
    September 16, 2014 at 10:41 am #

    I have a close friend who went through what you are going through. She also did the panel that you are waiting for results from and it came back to show she had contracted CMV prior to pregnancy. She now has a healthy, beautiful daughter. I can’t imagine how hard this must be for you and your husband- my thoughts are with you.

    Like

  10. Jennifer Blazsek
    September 16, 2014 at 12:30 pm #

    I pray for you that everything turns out well and your little Jellybean is born healthy. However, no matter the outcome just remember that regardless, she is a miracle. She is your miracle and as hard as it is to have a special needs child (IF things turn out that way), as her mother you will see that down the line, her needs will make you stronger. Eventually, you will see that she was meant to be that way and you would want it no other way. I was devastated when Marcus got his diagnosis, and it is still very hard, but I wouldn’t change him in a million years. He has made me a better mother and a better person. Lots of love to you and Mike!

    Like

  11. ~kboo
    September 16, 2014 at 1:03 pm #

    Just wanted to send my love and support and prayers for all of you. Depending on the latest test results and your decision about where to deliver or where to seek treatment…. if it is far away, then just do it. If it means taking an early leave from work so you can be near a hospital, then do it. Stay in an extended stay. You may be able to start pulling short-term disability since you’d be missing work for medical reasons.
    But most of all, KEEP PUSHING. Don’t give up until you find a doctor willing to work with you and who has experience with this new treatment (if it ends up being necessary or as a precaution). You ARE a fighter, whether you want to be or not. But you know, We’ve Got Your Back. Need us to make calls? Need us to do more research? Let us know…
    Also, if work is stressing you out, take a few days off so you can deal with all this other stuff. Work is just work — completely meaningless in the scheme of things, kwim??
    ((((HUGS))))

    Like

  12. Tanya
    September 16, 2014 at 2:09 pm #

    I’m so sorry. I hope all ends well. I just last week heard of CMV for the first time on my embryo adoption group. I don’t know anything about it though. Thoughts and prayers as you continue to gather more info and make decisions.

    Like

  13. Teddi
    September 16, 2014 at 5:24 pm #

    If it’s not one thing it’s another isn’t it? I haven’t heard of this before either. There seems to be a group on babycenter of cmv moms that seem to be pretty positive about the outcomes and percentages of issues even with transmission being pretty low, but I’m with you about being proactive. If you ever need anything out our way, you’ve got a place to stay if you need it! I’m hoping you just had a really negative nelly doctor and others will be much more helpful.

    Like

  14. hopefulandhungry
    September 16, 2014 at 5:53 pm #

    I hope everything turns out okay for you and your jelly bean. I’m sure it’s scary to hear that there could be a concern. Thinking about you. xoxox

    Like

  15. A Morning Grouch
    September 16, 2014 at 8:45 pm #

    Holy fuck. Oh my god, please please please please please let everything be okay. And if it’s a harder road than expected, thank goodness your baby has you as a mama. And we’re here for you to lean on.

    Like

  16. meglettx
    September 17, 2014 at 12:37 am #

    So so crazy. I have a friend who had a completely normal, healthy pregnancy (other than her baby also measuring small) and only AFTER she was born did they figure out it was CMV. Her blog is here if it is helpful at all to you. http://www.eveandlissy.com/ Her baby has done remarkably well as best as I’ve seen though. Prayers for you during this time. ❤

    Like

  17. Shelley
    September 17, 2014 at 8:27 pm #

    I am so sorry you are facing this and even though our circumstances are different, I so know many of the emotions you’re feeling. But I’m also blown away by your kick ass, can do attitude! That is awesome and exactly what jelly bean needs right now.

    I want to tell you what I wish we had done during our whole experience with knowing of an issue ahead of time but being told that ultrasound info is limited and everything would be determined at birth. I wish we would’ve prepared ourselves more for all the worst possible scenarios. Because the doctors prepared us for the best, and while it could’ve been even worse, it was certainly a lot harder than we had prepared for and I had a lot of breakdowns over it. I don’t think it would’ve made me worry more to do this additional research, I was already blind with worry. I just think it would’ve helped prepare me for those confusing conversations with doctors and nurses in the days, weeks and months that followed her birth.

    So basically, keep doing what you’re doing. Keep tirelessly seeking information. Shine light in every dark scary corner, because it will only better prepare you to advocate for your girl when she arrives. And please do keep us posted.

    We are rooting for you and JB. 🙂

    Like

  18. Tyger
    September 20, 2014 at 5:37 pm #

    I don’t know anything about CMV, but I am praying for your family and especially that baby! I do know about long NICU stays and if you need or want to talk I would be happy to listen and share

    Like

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