Tag: CMV
Status

A Result, an Update, and a Plan.

Tuesday, October 14th, 2014.  29w5d.

I know many of you have been waiting to hear the results of the amniocentesis that was done last week, to determine if the virus I have has crossed the placenta and possibly infected baby girl.  I appreciate your kind words, thoughts, prayers, happy vibes, good juju, and manic stalking more than you can ever know.  🙂

Our results came in earlier than expected – Friday afternoon, actually.  I do apologize that I kept some of you waiting, but before telling the whole world, we wanted to meet with doctors and gather some semblance of a plan.

I do hate blind results with no next steps in place…

*****

The amnio results were positive for CMV.  This means that the virus has crossed my placenta, and is currently in the baby’s blood stream.  Her urine, which is basically the amniotic fluid that was tested, is showing that she is shedding the virus.

I have it, she has it – and now what does that mean?

What this means is that we now have a higher chance for baby girl to be affected by the virus in utero, at birth, or beyond.  This could be in the form of mild central nervous system issues such as learning delays or mild hearing or vision loss, or more severe issues such as blindness, deafness, and mental retardation.

What this also means is that there is no real way to know if she will actually suffer any effects from the virus… There is just no way to be sure, aside from time and watching her carefully as she grows.  She could be perfect at birth and develop issues later, or she could just be perfectly healthy and grow up a normal, healthy, crazy kid.

At the moment, the ultrasounds are not showing anything greatly concerning, which the doctors say is encouraging.  They do say, however, that sometimes just because something is growing and looks appropriate via ultrasound does not always mean that it will function exactly the way it should.  We just can’t know what the future holds for this little one based on all of the data we have today.

The not knowing is excruciating.  It takes me back to the darkest days of infertility and not knowing if I’d ever be a mother.  This is different though, because there is an actual life, not a vision of a life, in the balance.

This is my child.  The one I feel kicking and squirming all day long.  This life is real and tangible, and in true danger of suffering anything from zero to mild to severe issues throughout her life due to a virus I couldn’t protect myself from, and could never have seen coming.

And so now, despite advice from my previous doctors to just wait it out, we push forward.  I’ve never been one to just “let things be”…

*****

My new doctor has recommended a two-pronged plan of attack on this virus, and the husband and I are fully on board.

She recommends a very high dosage of an oral anti-viral for me, to work on killing the virus that is in my system currently, and hopefully be some benefit to the baby as well.

She also recommends the “experimental” treatment I had mentioned previously, an immnoglobulin infusion, to be done once per month as soon as we can start.  Likely I would only be able to do the treatment twice before delivery considering how far along I am at this point – most women find out they are CMV positive much earlier in pregnancy than I did – but the doctor did say that despite the lateness of the treatment, she still sees the benefit in pursuing it.

So what is our time frame exactly?

We don’t know quite yet.  The one caveat in our treatment plan is that the immunoglobulin treatment is not something that is readily covered by insurance, and my doctor and her staff will have to fill out form after form, appeal after appeal, and plead with the insurance company to understand the necessity of paying for something that is not FDA approved for this use.

And paying for something so ungodly expensive.

These treatments, out of pocket, regularly cost around $20,000 each.  And I’m to have two.  Maybe three.

TWENTY THOUSAND DOLLARS.  PER TREATMENT.

I almost laughed, just because we somehow, by the grace of God, avoided having to pursue IVF at that cost… and now this?

The irony is there.  I see it.  It would almost be funny if it wasn’t so horrifying.

So despite having a plan in place, we wait yet again, this time on the insurance company and the amazing staff at University of Michigan’s Fetal Diagnostics Department.

May the odds be ever in their – and our – favor.

*****

And so that’s where we are.

Waiting.

Hopefully only for another couple of days… I’m told that we can move forward with treatment as soon as we have some kind of go-ahead from insurance, and from there, we hope and pray that the antivirals for me help kill off the virus, and that the immunoglobulin infusion treatment for baby helps boost her immune system so it can fight off any damage the virus could be causing to her system.

And still, we pray for the miracle that despite the virus, baby girl fights and stays strong and is born perfectly healthy.

I think that’s what every mother hopes for their child, but it’s a very real concern for me at the moment.

If you’re the type to send up a prayer, happy thought, or positive energy of any kind, please think of both the doctors who will be appealing our case to the insurance company, and doctors who work for the insurance company to have compassion for our situation.

Financially, this could be a huge blow, but considering there is no other choice but to do nothing, we will accept what we need to do to give our baby girl her best possible chance at a happy, healthy life.

…Even if she does have to sleep in a drawer.

*****

Again, thank you to everyone who has reached out with positive thoughts, success stories, caring words, and real and virtual hugs. 

You all are keeping us afloat, and we will need you even more in the coming days, weeks, and months.

Just… thank you.

*****

UPDATE, 10/14/14!!!

 

 

Status

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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