Tuesday, 15 November 2011

My Living Nightmare

So I will continue with my story of what happened to my pregnancy this summer.  After the heartcrushing NT scan results, I was scheduled to go to the "High Risk Team" at the hospital I was supposed to be delivering at, if I made it that far.  I went to the appointment with the genetic counsellor hopeful that he would clear up all this terrifying nonsense, but I was also afraid that he would clarify just how bad it was.  He redid the NT scan and took a lot of measurements on the ultrasound.  I could see the baby on the screen kicking its legs and moving around a lot.  It looked very cute and normal to me.  I loved seeing it on the screen.  Since I couldn't feel any kicks yet, it was interesting to see how "kicky" it was.  After a very long time he told us his conclusions.  He said the NT was significantly enlarged and now measured 5mm (up from 4.7mm a few days before).  Anything over 3.5 is considered high risk for chromosomal abnormalities.  He said I had 1:2 chance for a problem.  I could have a CVS or an amnio to determine for sure what the nature of the problems may be, and there was a chance that the baby would be ok.  Although he did say that with such an enlarged nuchal translucency I had a moderate risk of chromosomal problems.  The fluid was not only behind the baby's head, but also down the back.  This was very bad.  I said I wanted to have a CVS, since it could be done sooner, and the results are quicker.  I booked it for Monday, the soonest time available.  I don't know how I made it through the next few days.  I was so sick with worry, but still hanging on to hope that by some miracle it would all be ok. 

I went to 2 different counsellors while I was waiting.  One was from my fertility clinic and the other available through my work.  The fertility counsellor listened as I freaked out and told her the whole tale of the NT scans and my upcoming test.  She said I was engaging in catastrophic thinking and I didn't know for sure yet that anything was wrong, so just to wait for the test results before thinking about what to do next.  I couldn't do it, I had to go there in my mind and think what was I going to DO???  What kind of life was my baby and my family going to have?  I was completely freaked out and terrified.  I felt like my baby had already died.  The other counsellor seemed to be a bit in shock to get such a crisis case on her hands.  I guess normally she gets clients who are vaguely dissatisfied with their career or relationship and need to solve small manageable problems, not someone sobbing uncontrollably in the throes of a grief so intense that there is nothing that one could possibly say or do to make it better. 

I went for the CVS the following Monday, Aug 21st.  Guided by ultrasound, the GC used a long instrument with a "pinchy" end to go in and grab a small piece of the placenta for a biopsy.  The procedure went fine.  Although there is a 1:100 chance in miscarrying from this procedure, I felt like there would be no problem since the doctor was very competent and also I had a much higher chance of a major problem (1:2) that I wanted to know about.  In fact, even with these chances, I just felt that I had a 100% chance that there was something wrong and 0% chance of miscarrying.  I was getting sick of all these ratios.  I think that they are just a way of doctors covering their asses when something totally unexpected happens ("Well, there WAS a 1:10,000 chance that this would happen, I guess you're just the one-- it's not that I screwed up or anything!). 

Then began the waiting for the results.  That was hell.  The first day I felt fine, because I knew there was no way they would get the results back that soon.  By the next day I was getting nervous.  It was supposed to take 2 days.  By the 3rd day I was a nervous wreck.  Every time the phone rang my heart started pounding.  My hope and fear was exhausting me.  The fourth day I was on super nervewracking standby.  I held my phone in my hand all day waiting for the call, terrified of missing it.  I just wanted to get news that I could stop worrying and celebrate that the baby would be ok.  My husband and I had discussed what we would do if the baby had Down Syndrome.  We considered keeping it and wondered how that would work.  We wondered who would look after it after we died.  What kind of life would our child have, never being independent.  Would we be able to go on to have other children after having such a high needs child, at our age?  It was a heartwrenching decision, but we agreed to terminate if that was the diagnosis.  It terrified me as well that we may have to actually do this, and be judged by others who either have or have not been down this terrible road.  Either outcome just seemed like a disaster to me, I was very depressed about losing my healthy baby.  My only hope was an all clear from the CVS, and that call was just not coming. 

I finally got a call on the Thursday, but not the call I expected.  Someone called and said they had my blood test results.  What blood test results?  I didn't even remember about that except I did have a blood draw on the same day as the NT test.  That was 10 days ago.  They said unfortunately the test results were not good, that I had 1:8 chance for Down Syndrome and 1:2 chance for Trisomy 13 or 18.  They recommended that I have a CVS or an amnio based on those results.  I told here that I already had the CVS and was waiting for the results, I thought that was why she was calling!  I called the GC clinic finally to ask if they had my results.  The nurse said they hadn't come in yet but they should be in soon.  I then had time to look up what the hell Trisomy 13 and 18 were.  That was terrifying.  Internal organs on the outside of the body, parts of the brain missing, incompatible with life... WTF?  I couldn't finish reading, it was all too much. 

I felt sick, I felt like I was holding my breath for 4 days waiting for those results.  I called the GC a second time to find out if the results had come in yet.  They were already a day late, and they had said they may be early since my test was done early in the morning.  The nurse said "Oh, yes, they just came in a half an hour ago.  I can't tell you the results.  The doctor will call you when he's done with his appointments for the day."  All my hope was dashed.  I felt like if the results were ok, she would have said something more reassuring.  I knew from her tone that she was relieved that she was not the one with the responsibility for delivering bad news.

Waiting for that call was further hell.  I was super pissed off that he had to finish with his "other patients" before calling me.  What was I, chopped liver?  I'm his patient too!  I was jealous that he was probably tending to women with better prospects for carrying their baby to term than me. 

Finally the call came.  I was convinced that the baby would have Trisomy 13 or 18 and that terrified me.  Why was this happening?  He said "unfortunately, the results are not good.  As we suspected, the baby tested positive for Down Syndrome".  Shock.  I was in a daze.  I asked "What about Trisomy 13 or 18?"  He said "no, the baby is clear from those disorders".  I couldn't believe it.  How could my baby have 1:8 chance for Downs (12.5%) and have it and not have T13/18 with 1:2 chance (50%).  It made no sense.  Those odds are such crap.  The doctor also said he knew the sex of the baby.  Did I want to know what it was?  I wondered what kind of absurd person would go through that much testing and not want to find out the gender.  I said yes, tell me.  He said it was a girl.  Next, there was nothing else to discuss except about what to do to terminate.  He said I was too late to do it at the hospital since they only do it up to 13 weeks and I was now 13 weeks 1 day.  If I had gotten my test results on time, maybe that would have been possible.  He asked if I wanted to make my own arrangements or he could arrange it for me.  I asked if he could do it.  What do I know about making those kind of arrangements???  He asked if I wanted it done at a hospital or a clinic.  There was another hospital that would do it up to 15 weeks.  I said I wanted the hospital.  He said OK, he'll send a request and they will contact me.  But I could also look into a clinic if I liked and he gave me a few numbers.  This was so ridiculous.  I had an IVF to conceive this baby.  I went through hell and back with years of infertility, invasive treatments, and months of painful PIO injections to achieve this precious pregnancy.  I was also running out of time with my advanced maternal age.  This was my miracle baby, my saviour from childlessness, my rainbow.  I wasn't supposed to be planning how to get rid of it like some unplanned mistake!

I hung up the phone and just cried and cried and cried.  I was so devastated to not get a break and now I was not going to have a healthy baby after all.  For a whole week I cried most of each day and night, I just can't believe how many tears kept coming out.