CROSS YOUR HEART

I think I need to change the name of my website to something else, because lately it really does feel like the sky is falling.

Since it was exactly one year ago today that I lost my job, I thought it would be a good time to post something to my long neglected website.  Losing my job was a nasty bit of bad luck and then nothing bad happened for a long time.  In fact, in November, something very good happened.  After trying for what seemed like forever, Sasha & I found out we were positively pregnant on Thanksgiving.  I was very paranoid that something would go wrong, being over 40 and all.  By 12 weeks, I felt like we were in the clear and was ready to make an announcement after we got a special ultrasound for older women to check for Downs Syndrome or other chromosomal issues.

The ultrasound was going very well.  The tech was reassuring that everything looked good and the neck fold did not appear to be a red flag for downs.  Then she got very quiet.  She told me to get dressed and left the room for a long time.  Sasha decided now would be a good time for him to go use the restroom and then to get himself lost on the way back to the exam room.  While he was gone, a doctor came in the room and said:  “Usually, the heart and stomach are both on the left side, but here we are showing they are on opposite sides of each other.  We do not know what this means.  You will need another ultrasound in 4 weeks.”  Just then Sasha came back in the room.  I looked at him wide eyed as the doctor explained to him the situation.  Then they whisked me off to my scheduled blood test and Sasha had to go to school.  I was left on my own to try and process what the doctor had said.  What does this mean?

As soon as I got home, I attacked the Internet looking for clues.  The doctor did not explain which organ was on the wrong side.  The best thing I could find on the Internet was called Situs Inversus, where all the organs are an exact mirror image and everything is switched to the opposite side.  In most cases, people live normal lives with this and sometimes never even know they have it. 

About 7:00pm, I got a call from my doctor, who said the radiologists report diagnosed this as in fact Situs Inversus, so I must have heard her wrong when she said just the stomach OR the heart were on the wrong side.  We had to wait for the fetus to get bigger to be able to see more and get a firm diagnosis, so there began a torturous 4 week wait.

The next ultrasound went exactly like the first.  Everything was happy-go-lucky.  We could see the baby moving and even waving to us.  My sister and Sasha were both there with me and we all 3 were very reassured when the radiologist said the heart was pointing to the left, exactly where it should be.  Then again she got very quiet and abruptly left the room.  Then the head radiologist guy came in and started fiddling around with the ultrasound.  Suddenly he says: “The stomach is on the wrong side, this could be a sign of a serious complication for the heart”.  He starts talking to us about getting an amnio, which incited a discussion about termination.  I was completely thrown off and put on edge by this guy.  I was basically laying on a gurney, wearing no pants while he told my husband: “Well, it is your wife’s decision…”:   This time he called what we had Situs Ambiguus. Don’t look it up, the Internet has absolutely nothing good to say about this, including mass amounts of surgery required and 5% survival rate beyond the age of 5 years.

Again, my doctor calls me about 7:00pm and reads me the report.  This time, she mentions the Inferior Vena Cava vessel could be interrupted, meaning bad things for the heart.  It also says there could be an indication that the baby does not in fact have a spleen.  When only some of the organs are in the opposite place, it makes it very complicated for everything to connect correctly.

We are reeling.  What the fuck is this?  What is going on?

Again, we are told we need another scan when the fetus is bigger and this time we are scheduled with a Perintologist, a high risk pregnancy doctor that should be able to spread some light on what we are dealing with.

Another 3 weeks passes.  I am terrified to meet with our Perinatal team, because what they could tell us could pretty much stop my world.  We have a long day of appointments scheduled, including Ultrasound, meet with the Perinatalogist, meet with a Genetic Counselor, and get an amnio.  I was totally throwing up in the morning, not sure if it was morning sickness or that I caught my son’s stomach bug.  The ultrasound was very long and I did not feel well throughout.  We finally meet with the specialist with a LONG list of questions and he proceeds to tell us NOTHING NEW.

He confirms that the stomach is indeed on the right (wrong!) side of the body.  This could mean that all the organs in the lower abdomen are opposite where they should be.  Often the case in this situation is that the baby does not have a spleen.  He gives us a new name: Heterotaxy Syndrome.  He explains that there is a spectrum of complications that come with this very rare disorder.  We need to get a Fetal Echo Cardiogram to see if there are any congenital heart defects.  A cardiologist should be able to see if the blood vessels from the heart are going in the direction they should be or if everything is fucked up.  We probably won’t know about the spleen until after birth, but that is small potatoes next to the heart.

We know that the chances of us getting away without any complications are low, but he is at least telling us it is possible to escape major surgery or even death.  This is what we are holding onto right now.  This is what gets us through the night.

While in line waiting to get the amnio, I felt faint, very faint and then almost fainted.  Sasha rushed me to a chair, where I immediately began throwing up into a waste paper basket in front of all the other high risk pregnant women in the waiting room.  Thus began my week long struggle with the stomach flu, just when I needed my strength the most.  Needless to say, I did not get the amnio.  I still plan to get it, but the specialist said this is rarely caused by a chromosomal disorder.  It is just a rare, random weird thing with no known cause.  Frankly, we would have preferred to win the lottery. 

We have our appointment with a Perinatal Cardiologist on Monday and are hopeful she will finally be able to give us some hard answers.  We are terrified, but holding onto that faith that there has to be some good news in there somewhere.

By the way, we are having another boy, and are making a deal with him that we will fight for him, but he has to also fight for us.

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18 Comments on “CROSS YOUR HEART”

  1. Eleanor Says:

    Oh, Cloudy, my thoughts are with you and my fingers are crossed for you. ((((hugs))))

  2. andria Says:

    I’m sorry that you’re going through such a scary time. I’m keeping my fingers crossed for you and your family.

  3. sam Says:

    1) congrats!

    2) I’m so sorry that your baby is having problems. I don’t understand why so much of prenatal testing is “something is wrong but we need to wait and let you stress for a few more weeks/months.”

    3) let me know if I can do anything to help

  4. Violet Says:

    My thoughts are with you, my prayers are with you, and I wish you nothing but the best as you traverse this terrain. Xoxo to all of you.

  5. Kelly Says:

    I’m so happy about the pregnancy and so sorry about the babys health. He couldn’t have been luckier though, that he’ll be born to a wonderful mother who is already willing to fiercely love and fight for him. I will be hoping and praying for the best possible news. don’t forget, I’m here for any type of venting you need to do. Much much love and strength to you.

  6. Yo-yo Mama Says:

    Holy crap! You’re right, that is a doozy of an update. I can’t help but be so thrilled about your pregnancy, your baby. How to reconcile that with the congenital defects is confounding. I will pray that this special little miracle ends up being the kind that tells his amazing story to HIS children someday.

  7. teranika Says:

    I have been thinking you regularly, and picturing myself sitting next to you and holding your hand through this. I am also filling my mind and heart with images of your baby boy – a quiet fighter, a happy boy who will be holding your pinky finger someday soon, and who will make his way through.

  8. Sharnee Says:

    My heart is crossed and crossed again!
    Big massive hugs. Thinking of you guys.
    xxx x 100000000

  9. Megin Says:

    Sending LOTS of hugs and LOTS of hope.

  10. Dan Says:

    Another boy! Congrats! Of course he has to have his own special story, eh? So typical of younger brothers… He’s lucky to have such strong, loving parents. Sending you even more of my love.

  11. geekbetty Says:

    I LOVE YOU!!! The last sentence in this confirmed it for me. HE is so lucky to have you. I’m sorry to hear about the complications, please keep us updated.

  12. Acorn Says:

    ((((((HUGS)))))))

  13. Beth Says:

    I am so happy to hear about your pregnancy but I’m sorry it came with other frightening news. I hope that everything turns out well for all of you.

  14. lydia k. Says:

    Just had our 19 week ultrasound today. We found out we’re having a girl, and that her stomach is on the wrong (right!) side of her body. I’ll be keeping up with your blog to see how your journey goes. They told us to make our appointment for the pediatric cardiac echogram in a few weeks, after her heart has a chance to grow some more so they will be able to see it better. I’m going to try my damnedest to stop googling… my husband makes the good point that no one posts a blog or question or story when the stomach’s on the wrong side and there are no problems with it… so I’m just praying that is possible. And if it’s not… we’ll take it as it comes. Best wishes to you guys.

  15. Elaine Says:

    20 week exam today, stomach on the wrong side, waiting now for amnio results and to meet with a paediatric cardiologist. Desperately seeking someone that has these same experiences – need hope.

  16. Anonymous Says:

    Can you please tell me the outcome of your situation… All good I hope! I’m going through exact same thing right now I’m going out of my mind.


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