Tuesday, 18 October 2011

Heartbreaking Diagnosis

I have not written for quite a while.  To give the fast-forward version of the story, I was thrilled to be pregnant all summer.  I had waited so long for this pregnancy, it seemed like something out of a dream.  Something too good to be true.  That kind of made me afraid.  It ends up, for good reason. 

I had several normal ultrasound scans.  Seeing the baby's little beating heart was the most amazing thing I've ever seen in my life.  I will never forget it.  I was in love with this little life inside me.  I took little videos of the ultrasounds on my camera and even started a weekly video blog of my pregnancy.  (Which is why I neglected this blog).  I shared my news only with a few people who were close to me:  my mother, my brother and his two kids who came to stay with us in July, one aunt, and my closest childhood friend. 

I started to feel sicker.  I knew that it was a pregnancy symptom so I didn't mind.  My clothes started feeling tighter.  I bought a larger bra.  Things were progressing "normally".

At 11 weeks 6 days I went in for my "graduation" ultrasound from the Fertility clinic.  They measured the Nuchal Translucency of the baby.  The ultrasound technician didn't say much.  On the screen I could see that the dark part at the back of the baby's head looked too big.  I had seen pictures in the baby books I had bought, and my scan looked like the "abnormal" NT screening.  I was hoping I was wrong and that this was how it was supposed to look.  I knew something was wrong because of the technician's nervous, unfriendly attitude.  Normally she says something reassuring or congratulatory, but this time she just said "you need to see the doctor", and rushed out.

We waited in the waiting room for two hours.  My husband and I couldn't even look at each other, we were so terrified.  The doctor scurried by and said "they have to record the measurements and do the calculations, then we'll get back to you".  She went off to do some IUIs and IVFs.  Eventually, no one else was left in the clinic waiting room but us.  Normally there are 30 - 50 people sitting around.  I felt like we were such a sad and rejected couple, sitting there waiting and no one wanted to talk to us.  My stomach was in a knot.  Finally, she came back and sat us down in her office.  I hoped for some good news.    "Unfortuantely, the scan was abnormal today.  I'm so sorry.  I know this isn't the news you want to hear", she said.  We were stunned.  What did this mean?  She said we had 1:2 chance of chromosomal abnormalities with the NT reading that we got, combined with my age.  A normal NT thickness is under 3mm and our baby's was 4.7mm.  She said the chances are very high for Trisomy 21, 13, or 18, or Turner's Syndrome, but they can't tell until they do further testing.  Then she asked what we would do if it was positive, would we terminate the pregnancy?  I looked at my husband.  All the blood had drained from his face.  I said I didn't know what we would do, did he know?  He said he didn't know.  I didn't understand what she was saying.  Did we need to make a decision right then to determine the course of action?  I wanted further testing so we were told we were to go to the hospital to the High Risk Team to redo the NT scan and discuss with a genetic counsellor what to do next.  There was a possibility that the baby would be fine.  But I was very pessimistic since the NT scan was so bad, it was not a borderline case, it was definitely enlarged and that meant trouble.  Only the exact nature of the trouble was yet to be determined.  We were given our "graduation papers", which were the reports from my previous ultrasounds at the fertility clinic, that I was supposed to take to my OB/GYN for the rest of my pregnancy.  Instead I was taking them to the high risk team.  I broke down crying as they gave me the envelope and crossed out the OB/GYN's name and wrote the genetic counsellor's name.  It occured to me that this pregnancy was doomed and I would not be taking home a live, healthy baby.

The next two days were a blur of pain and grief.  I was absolutely terrified, and confused.  I felt a crushing weight on my chest and I could barely breathe.  My stomach tightened further and I could not eat a thing.  At night I couldn't sleep.  I cried and cried.  It's a good thing I didn't have to go to work since it was summer holidays (I'm a teacher) because there is no way I would be able to go in. 

I researched about the Nuchal Translucency scan, what the results could mean, and about the conditions that the doctor had mentioned.  That terrified me even further.  I could feel my blood running cold in my veins.  I felt like my life had turned into a movie.  I had never even heard of these things before.  And they are terrible!  I couldn't even finish reading it all, it was too much.  How could this be happening to me?

I sent a message to my friend that there was a problem with the baby.  She called back later that day and I could barely get one word out before I started crying hysterically.  She said she was at work but there wasn't much going on so she could leave and come to my house.  I told her it wasn't necessary, there was nothing that she could do about this, but she said it's ok, she's going to come over anyway.  I was glad that she did.  I cried and cried and cried, and told her all about the NT scan.  She said that I should wait until the further testing came back, maybe it would end up ok!    She also brought me some soup and a sandwich.  I hadn't realised that I hadn't eaten and trying to get down even a mouthfull of soup was difficult.  I tried to force down some bites of the sandwich.  Her kindness in knowing that I would need this brought me to tears as well.  I felt so alone in what I was going through.  I didn't know of anyone talking about an abnormal Nuchal Translucency scan or 1:2 risks of chromosomal disorders.  Most people have a 1:800 risk or something way more reassuring. 

Part 2 of my pregnancy disaster to follow...