I’ve been asked a few times in the past couple of weeks what exactly is going on with my pregnancy.
Is the baby okay? Are you okay? Why are you going to the doctor so much?
Is everything alright??
Short answer? No. It’s not.
However, the longer answer is that we’re well on our way to answers and possible solutions, and those are all very positive things.
Let me ‘splain.
…In great detail and at great length. It’s been a long couple of weeks… you’ve been warned. :)
Back in August, I had a routine anatomy scan at 20 weeks. Baby looked wonderful, just a little smaller than average, which didn’t much surprise me considering I am married to a hobbit. :)
My OB’s office said that because a couple measurements came back smaller than they’d like, they would prefer to send me over to Maternal Fetal Medicine for a follow-up scan, just to see how two weeks and a different machine looked with baby’s measurements.
No biggie, right?
So I went to the follow-up, blissfully ignorant that anything would be wrong. The sonographer was chipper and lovely and said my baby looked beautiful to her. Once the scan was complete, a whole horde of doctors came into the room with a genetic counselor to talk to me about “my options”.
They told me that the ultrasound had showed not only some smaller measurements that were somewhat concerning, but also bright, or echogenic, areas in the bowel. I was told that neither of these was terribly worrisome on their own, but together could be markers for all sorts of diagnoses like Down’s Syndrome, cystic fibrosis, and other genetic abnormalities.
I was offered more advanced genetic and infections testing, which I readily accepted.
Two weeks later, around 24 weeks at this point, I was told that my genetic testing had come back looking excellent, with very low odds for the baby having any of the main genetic abnormalities they test for, and that since I am not a carrier for cystic fibrosis, that was also not a concern. My infections panel however, had come back positive for CMV, or cytomegalovirus.
You can research CMV in pregnancy all day long, and it will scare the pants off you. It’s extremely common, and yet I’d never heard of it.
Well now I’m extremely well-versed and educated. I know the important things, such as:
- Most people have been exposed to CMV by the time they reach adulthood, and by then have formed antibodies to the virus, which is not dangerous in pregnancy.
- The only time it’s really dangerous to have CMV is if you are exposed to it for the first time – a primary infection – during your first trimester of pregnancy.
- If that happens, there is a much larger chance that the infection could cross into the amniotic fluid and infect the baby.
- If a baby contracts CMV, it is called Congenital CMV or CCMV, and can have some serious effects on the baby, including blindness, deafness, and mental retardation.
- There is a much higher chance that a baby born with CCMV will not be impacted by the virus, but one in six will suffer serious issues…
- The only way to test a baby for infection is either through amniocentesis, or to wait until the baby is born and test her then.
- There is no standard treatment for CCMV in babies, but there are some antiviral protocols being practiced by Pediatric Infectious Diseases Specialists nationwide. These treatments cannot reverse serious issues caused by the infection, but can help in possibly preventing further damage from occurring.
- There is one, somewhat experimental treatment being implemented with babies still in utero… And that treatment is showing excellent results in some large studies that have been and are currently being done.
My current Maternal Fetal Medicine specialist recommends the wait-and-see method, wherein we would just monitor the rest of the pregnancy and once the baby is born, she will be tested for the infection.
If you’ve been reading this blog for any amount of time, or know me in person at all, then you know that I’m just not that type of gal. No sir.
And so I’ve gone rogue.
Big surprise there, eh?
I have been reaching out to anyone who may be able to help me, including an amazing organization, Stop CMV, who was integral in connecting me with a wonderful doctor – one who is leading the national research being done on CMV in pregnancy.
This man, Dr. Adler, reached out to me and we spoke on the phone for a solid 20 minutes on Monday. He gave me a metric crap-ton of information, including the names of some doctors in my area who may be able to see me and help me gain access to possible treatment while it can still be effective.
On Tuesday, I received a call from the University of Michigan’s Fetal Diagnostics Center, and they set me up for an appointment for an ultrasound and second-opinion consultation with one of their Maternal Fetal Medicine specialists. They work fast over there!
On Wednesday – yesterday – I showed up to said appointment (I told you they work fast!) and had an ultrasound at 29 weeks to look over baby and all her measurements yet again.
The sonographer and two separate doctors confirmed that the echogenic bowel has disappeared. There are no further signs of infection that they can see, except some somewhat smaller measurements – however, baby is just measuring a bit small overall – nothing scary. Also, again, married to a hobbit. So there’s that.
I was reassured that my baby looks healthy and great. Her brain is even measuring a bit advanced for her age, so I’m going to assume she’s a smart little gal, too. :)
And that’s when the appointment got interesting.
The MFM doctor sat me down and told me that in her opinion (and in the opinions of the experts also studying this virus…), the only real way to confirm if baby has this infection while there is still a chance to possibly treat it is amniocentesis.
I nodded, hoping that she would want to talk about scheduling this procedure for sometime soon. I’m eager to have these yes or no results in my hand so the husband and I can have either a.) the relief of knowing that our girl doesn’t have this possibly dangerous infection, or b.) knowing that she does, and having the ability to then pursue treatment and form a game plan.
This wonderful doctor then told me her plan: to send me to get some lunch, and then have me come back upstairs for an amniocentesis.
In like an hour.
…I was a little stunned. I mean, holy CRAP do they work fast!
So I took her up on it.
In case you’re not familiar with what an amniocentesis actually is, I can give you a quick description.
A doctor takes a needle about eight inches long, and pokes it into your belly, through layers of muscle and fat, and into your uterus – all guided very carefully by ultrasound of course – to get a two-tablespoon sample of your amniotic fluid for testing.
Sounds fairly simple, but there’s soooooo much more than that.
In my case, baby was relaxing after lunch, taking a bit of a snooze upon our first investigation by ultrasound. The doctor found a good spot to gather the fluid, and inserted the needle.
Sidenote: When a needle is inserted into your skin, it stings. When a needle is inserted into your uterus, you cramp up like you’re having a CONTRACTION.
Once the cramping subsided, the doctor started carefully watching the ultrasound so she could get a fluid sample. Shouldn’t take more than a minute, she said. Most babies, if they even notice, usually move away from the needle, so there’s really no danger to the baby, she said.
Apparently my baby is a curious little rebel, because she attempted to GRAB THE NEEDLE INSERTED INTO MY UTERUS.
There was never really any danger of her being harmed, as the doctor had the needle tip well out of her reach before she was close enough, but the whole situation caused the amnio to come to a screeching halt. The needle was removed, no sample was taken, and I was told to breathe and relax for a few minutes and they would try again.
So yes. I basically had TWO amniocenteses yesterday.
The second attempt at the procedure was quick and successful, though still very painful, and I was told to lay back and relax for a few minutes while they prepared my shot of Rhogam.
Oh yeah. My blood type is negative, and the husband’s is positive, so anytime something like this occurs where there’s a chance that the baby’s blood could mix with mine, I get to have a really awesome shot with yet another giant needle. My last shot was a week ago at my routine 28 week OB check-up where I was told as a reward for passing my glucose screening, I would get a shot in the arm.
YAY. SHOTS! And not the fun kind.
So today I feel somewhere in between a pincushion and a waterbed that’s been stabbed and patched. Moving a little slowly, and overall just a bit sore.
The good news is that despite my tiny, big-brained, strong-willed child’s antics during the procedure, my amnio results should be in early next week.
If the results are positive, we can know that certainly the baby is exposed to, and likely has the infection, and we can start the process of pursuing treatment to help prevent the possibility of serious side-effects.
If the results are negative, we can breathe easy, knowing that baby will almost certainly not be born with, or be impacted by this infection.
Obviously we’re hoping for the latter, but if the results do come back positive, it’s nice to know that there’s a solid plan in place, and a doctor who very much supports our hopes for treatment, no matter if it is a bit experimental.
And so that’s where we are today.
My apologies for writing such a novel, but the past few weeks have been quite a roller coaster ride, to say the least. It only makes sense to keep those closest to us in the loop, and we will definitely update once we have next week’s results.
Thank you to all of you who have reached out, offered to help, listen, provided information, or just generally cared enough to be present during the craziness we’ve been trying to manage.
I know there’s only more crazy to come in the next few months, but it certainly helps to know that we have such an amazing support system, as always, and without fail.
I love you guys, and this kid will too. :)