Between Heaven and Hell

When we went for our nuchal translucency test a few weeks ago, the maternal fetal medicine specialist gave us several options for the blood test portion of the screening. We chose the sequential integrated test which would require blood work a few weeks after the initial scan to be able to get a more accurate result.  I went for that bloodwork on a Monday when I was 15w4d and was advised that we would have results by the end of that week.  The next day, we left for our long-planned vacation in the northeast.

Mira (on the wall)I wasn’t particularly concerned about the screening results.  The nuchal measurement was above the median, but still well below the 95th percentile and the initial bloodwork came back ‘normal’, although they didn’t give me a discussion of what normal meant.  I wasn’t going to press for it either since it was normal.

So, we enjoyed a few days in the Big Apple, seeing the sights, doing Broadway, and just being on vacation.  That Friday, we headed to the next portion of our trip – a cruise through New England.  We were giddy as newlyweds to get on the boat and enjoy the cruise.  First, of course, was the life boat drill that involved lovely dayglo orange life preservers and a demonstration of how to jump into the water if required.  We got back to our cabin and my cell phone was ringing.  It was the MFM with the results of our screening.  That’s where the nightmare began.

Our screening for Down Syndrome, aka Trisomy 21 was 1:20, meaning that there was a 5% chance of Downs, with all other results normal.  Unfortunately, it took several tries for me to understand what he was saying as the cell reception on a ship with tons of steel is not exactly ideal.  What was worse was that I had to go on the balcony to get any reception at all and so I was attempting to disguise the topic of conversation while also taking in what he was telling me.  Mr. X began to swear which frightened me more than what the doctor was telling me since he rarely ever swears out of anger.  He rarely gets angry period.

I was surprisingly calm as the doctor was doing his spiel.   I understood that it was not a final answer and I felt pretty certain that it would turn out just fine.  It was until he started throwing out the terms ‘terminate’ and ‘special needs’ that I began to really get worried.  It’s one thing to be told that you have a 5% chance that your unborn child has a chromosomal abnormality that could mean profound disability and quite another to be told that you can terminate the pregnancy you have worked for four years to bring to fruition or have a child who is labeled from birth as ‘special needs’.  In hindsight, I would have preferred him to simply leave it to what our options were for further testing rather than bringing up what to do in the event that the 5% chance came true.  That particular bell, however, could not be unrung.

So, there we are at the beginning of the cruise that we had been looking forward to as the ultimate escape and we are brought back to reality with one five minute phone call.  The first thing to do was to decide what further testing we wanted.  We both agreed at the time that we were not willing to undergo an amnio because the ultimate worst case scenario has always been having a perfectly normal baby that is miscarried due to a botched amnio.  The other options were an enhanced scan or do nothing.  We chose the enhanced scan which I called for and scheduled for a few days after our return.

Unfortunately, that was all that we could do at that point.  It was either stew or put it aside and go on with our cruise.  I am a stewer by nature and I was in fine stewing form after this.  Dinner was a blur as was conversation with our table mates. I could barely eat and wanted nothing more than to go back to our cabin and stare at a wall or Google.  I did neither, and had a terrible night’s sleep.  Everytime I fell asleep, I would wake up in terror at the thought of terminating if it came to that.

It wasn’t until the next night that matters came to a head and I was finally able to process all of the feelings that I had regarding the information we had not twenty-four hours earlier.  Mr. X and I were on our bed as we sailed away from our first port and I just started bawling.  I let it all out – my fears, my anxieties – and we talked it through.  We came to the conclusion that we needed to know and that there would be an end to this particular nightmare, even if it was not meant to be at that particular moment.  We talked about all of our options and what we would do if we had to make a decision.  Most of all, we talked about the 95% chance that everything was fine and that we would not let this ruin our vacation.  From that moment on, it did not.

We had a lovely trip and I was able to really enjoy myself.  For that, I am so proud and thankful and that is enough for me for now.

image: Mira (on the wall)

11 thoughts on “Between Heaven and Hell

  1. oh, mrs. x. what a way to spend your vacation. just awful. you’re absolutely right — the doc should have just told you about further testing options.

    as I’m sure you know by now, those screenings are based on age and often give false positives. of course the scan will tell you more. when is it? wishing you some peace until then.

  2. Wow. I don’t know what to say, except what the doctor you talked to obviously has some kind of awful human relations handicap. I hope you find the answers you need, and that your little one is safe and healthy.

  3. As a fellow stewer, I understand completely how the phone call must have affected you. I’m impressed and glad that you were able to process and resolve, at least enough to enjoy your trip. I would be a hypocrite if I told you that your odds were nothing to worry about it; I spent my whole pregnancy waiting for the other shoe to drop…but I will say that 95% is a good number. I don’t get though why the dr. brought up “special needs” and “termination”…seems unduly alarmist.

  4. Oh, I could just wring that doctor’s neck! So *so* unnecessary to stress you with that kind of language. Will be thinking good thoughts for you and cheering for that 95%.

  5. My dear Mrs. X – I am sorry that your vacation was tarnished by the stupid doctor…and while he was doing his job, there has to be a better way to talk about things of that nature…

    I will relate to you that my brother and sister-in-law were told that their firstborn would undoubtedly be severely brain-damaged and have intense special needs, therefore, they should terminate. They chose to continue the pregnancy and my nephew is now a junior in high school with an offer of 5 guaranteed academic scholarships to top universities, and is an amazing young man with an astonishing intellect, is a gifted musician, and is an all-around cool kid.

    Every time I talk with him, see him, or send him an email, I think of that doctor and just have to say “PBBBTTTTHHHH!!!!!”

    All that is to say that these tests only show you what MIGHT happen, not what will.

    And now your question to answer to yourself is this: If you were told that without a doubt your baby would have special needs, would you keep it or terminate the pregnancy?

    Only you and Mr. X can answer that, and if your answer is “keep it”, then I recommend not doing any more of those tests, as all they can do is cause you anguish about something that might not ever come to fruition.

    Prayers for you as you continue down this path…

  6. What a horrible start to a vacation. That news could have waited until your return…jerk.

    (Was it the cruise out of NY to Vancouver? My boss and his wife did that cruise 9/24-10/3 ish.)

  7. I agree – dumb doctor! Thinking of you – cant wait until you are on the other side of all this anguish with a happy and healthy baby x

  8. Oh, Lord. He couldn’t just leave it at “additional testing” could he. Bless your heart. I’m so sorry that happened the way it did, but good for you for stuffing that mess onto the back burner and going on with your vacation. That is incredibly difficult to do – and shows amazing strength and resilience on your part. The stats are completely on your side, and I can’t believe your doc presented it to you that way. Really don’t think you’ll need the luck, but I’ll cross everything for you just in case. I’m so glad you managed to enjoy your lovely vacation!

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