Archive for March 2011

TO SPLEEN OR NOT TO SPLEEN

March 23, 2011

Imagine:  laying on a gurney in a darkened room – Belly exposed and sticky with lubricant – Crying your eyes out in extreme joy because you just got the best news of your entire, sorry life.

We got the fetal echo cardiogram FINALLY got some good news.  We saw a well-respected cardiologist and at first she freaked us by telling us all the really bad things that can go wrong with the heart with this kind of stomach defect and then she said: “But I don’t see that happening here”.  At this stage she can see no obvious signs of a congenital heart defect.  This is amazing news.  Another worry was that the inferior vena cava (the large vein that returns deoxygenated blood to the heart) was interrupted, but she says, from what she could see, it appears normal.  The veins and ventricles she can see all appear to be going in the direction they need to be to the proper places, including 2 to the lungs.  At this moment, she can predict no need for heart surgery.

To review: NO OBVIOUS SIGNS OF CONGENITAL HEART DEFECTS!!

We are cautiously optimistic, because the baby was uncooperative making it hard to get clear images.  We will get another echo cardiogram in about 7 weeks to confirm her findings.  There are many things she cannot see that can still be a problem for us, like if there is a small or medium hole in the heart, but she was pretty much ruling out catastrophic problems with the heart.

We had no idea what kind of information we were going to get from this test, but ended up getting the best possible news concerning the heart.  We know that we are not out of the woods, but we still feel truly lucky to get such a good report.

Here are some highlights from the report:

Fetal cardiac anatomy is normal.  Cardiac chamber sizes are normal. Ventricular size, wall thickness and function are normal.  It goes on and on about how normal everything looks, then says: Since the fetal heart develops in the first trimester, moderate to major cardiac anomalies can be EXCLUDED.  The Inferior Vena Cava is (and this is a biggie) NOT INTERRUPTED!   FUCK YEAH!!!!!!!!

We can go ahead and celebrate this news about the heart, our biggest worry, but the baby still has a birth defect. Our next concerns are if the bowels are mal-rotated or experiencing a blockage or if the baby has a spleen.  We most likely will not have these answers until after he is born.   Despite this, I need to get new ultrasounds every TWO WEEKS!  We will also meet with a surgeon to talk more about the possibility of bowel mal-rotation and get an MRI to see if we can see any oddities pre-natally.  There is a procedure called LADD’S that can be done to fix the bowels, if this is an issue.  If he turns out to not have a spleen, he would need to be on medications & antibiotics for the rest of his life and could be prone to serious illnesses, like pneumonia and infections. 

In a way, we are back to not knowing what is wrong, but getting to rule out major heart anomalies is a major, very exciting, huge, insane relief.

Thank you so much for all the prayers, awesome vibes, amazing thoughts and esteemed friendship.  Now let’s refocus all this energy and pray to goodness gracious the boy has a damn SPLEEN!

HI!

CROSS YOUR HEART

March 17, 2011

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.