You Didn’t Think I’d Be Back, Did You?


I know. Here I am, 20 weeks pregnant with twins, and posting on my grief blog. You might think it’s because today marks the anniversary of my spina bifida PPD, but it’s not. I’m back.

Honestly, I don’t know if I am *back* or not, but we did get another poor prenatal dx. I don’t know all the details, but there is a brain anomaly with one of the babies. It would be nothing, or could be serious, or it could even be fatal.

So far, we know nothing. No details. I had an amnio on Monday and have an MRI and meeting with a pediatric neurologist on January 2nd. Does that date ring a bell for any of you? It’s the date we started the termination for Baby M.

And people tell me not to be superstitious.

I’m hoping I get the FISH results today, but as I well know, the holidays are a bad time for getting medical advice.

I was frantic on Monday because I was 19w3d. Texas has the 20 week cut off. BUT, it’s measured by conception date, not by LMP, or something like that. All I know is that if we were going to terminate in Texas, we would have to start the procedure on Monday.We’re not ready for that.

I have to wait for the answers (at least, what answers we’ll be able to get prenatally) before I can make a decision that big again. My genetic counselor is putting phone calls in to an out-of-state clinic to ask the rules and regulations for selective reduction in the case it comes down to that, but at this point, we are still hoping for good news: that we will be on the minor end of the spectrum.

I’ve been talking to people online about the dx and how it affects THEIR kids, but really, I don’t want to know that – I want to know how it will affect MY SON. And no one can answer that until after he’s born and we start to see how he meets or misses his milestones, how he interacts with other people. We should get a clear view when he starts school.

If this were the only bump in the road that we had encountered in the last 3 years year, I think I’d be able to be more positive about it. But people don’t get it. Sure, we could end up on the easy side of the spectrum, but historically, we need to look at the worst case scenario.

Some people seem to be hoping for a false positive, and while I secretly dream about that, it’s not realistic. My anatomy scan (NOT A GENDER SCAN for all those assholes out there who have no idea how traumatic an anatomy scan can be) was done in 3D at the MFM’s office. Baby A’s CC was clearly formed. Baby B’s was not there. You can’t blame it on the machinery – it’s not like this was some shitty 2D stuff at the OB’s office. I just think I’d be setting myself up for more disappointment if I really allowed myself to think that there might be a false positive. Besides, I’ll know soon enough anyway.

I just wanted healthy. Why is that too much to ask for? Why is it the things that other people take for granted are the very things that my husband and I have to fight for? How much more can our relationship take? How can we afford another medically fragile individual in the house? How would we be able to meet our daughter’s needs if our son ended up being on the bad end of the spectrum? How could I love with the guilt that I allowed him to suffer? I just want him to be happy and healthy.

I thought spina bifida was a grey area. I had no idea.


5 thoughts on “You Didn’t Think I’d Be Back, Did You?

  1. I had to look up “cc” and discovered corpus collosum. I also read the following article in regard to the serious prenatal scan finding you have received.

    Foremost, I am sorry that you have even received this news to begin with. I really hope that for both you and your baby’s sake that this is not the final diagnosis and that there is some more benign diagnosis.

    I have heard of selective reduction with multiple gestations and I can only imagine other questions floating through your head like how would the selective reduction effect the other twin if there is potential consequences and chance for harm.

    The grey area IS a very hard place to live and from which to make decisions. The time pressure from Texas is also not helpful and lacks complete understanding as to the actual reasons decisions to TFMR are made.

    There are a lot of “what ifs” out there I imagine floating around in your head and weighing on your heart. Please take one moment by moment, day by day not trying to be overwhelmed the news you receive.

    Apparently there is a WHOLE organization for disorders of the CC — National Organization of Disorders of the Corpus Collusum (NODCC):
    And … I imagine you’ve probably already beat me to that with Dr. Google! I am also not pretending that it is comforting to know there is an organization like this … yes, that’s great it exists, but I’m sure you wish you didn’t have to know one word about them.

    Personally, I know I would bawl my head off reading information on the site regardless of any positive outcomes. The grey diagnosis does wreak the worst havoc on one’s emotions!

    I do think this was a bit helpful though:

    A confusing jumble of emotions occurs at the time of diagnosis — shock, denial, anger, and sadness, to name just a few. Be sure to allow yourself to fully feel these emotions as they are a normal and necessary part of the process. … an almost universal thread of advice seems to come up: Make certain, despite your … countless doctor appointments and the incredible level of stress you may feel, to take care of yourself. … Do not hesitate to seek counseling to help you deal with your situation; you are starting an entirely new chapter of your life, and it is a journey that is made easier with the help of other people. Try to make time for yourself – even if it is nothing more than a walk, a long bath, or a chat with friends – each day.”

    Although being pregnant at 20 wks I’d nix the “long bath”! 😉

    Again, I’m sorry that you are having to go through this. I know you have no problems being realistic, but don’t let your imagined worst fears get the best of you. Remember to breathe. You ARE a very strong women without a doubt and you will make it through this situation no matter what information you receive and what choices you make … it’s easy to second guess decisions of the past, and worry about what you’ll decide in the future when you haven’t even been presented with concrete information. The past can make you depressed and the future can make you highly anxious … the present moment is all you actually have.

    And you are not alone in what you are going through, you won’t be alone in what decisions you will make and you won’t be alone afterwards … they are women who have gone through what you’re going through and you have a supportive family and friends who will help you through no matter what happens. Please don’t forget that! ❤

    • Thank you. Right now, we are just waiting fit the MRI and neurologist appointment. Not sure if I’ll be seeing my therapist next week before my appointment or after. I think I’ll see if I see her late Friday, after we get more information.

      One hour at a time in my new mantra.

      I will say that I’m handling things better this tine around , but I don’t know if that’s because I’m healthier this tine around or in just in denial.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s