The Cold, Hard Truth

    It’s been a tough few weeks for me, so I thought I’d blog about it.  You know blog is Latin for “therapy”. 

    I’ll have to go back a ways to catch you up.  But I promise I’ll give you the Reader’s Digest version.  Ever since Cruz was born, I knew I didn’t want him to be an only child.  Nothing wrong with “onlies” but for as long as I can remember I’ve pictured myself with two children…even before I could picture their father!  As I’ve mentioned in my earlier entries, I’m a “mature” mom.  So I knew that we wouldn’t be able to wait years in between births. 

    Before Cruz was born I experienced two miscarriages.  They weren’t particularly traumatic.  Both happened before the end of the second month.  To me they were more of an annoyance.  Anyone who knows me knows how impatient I am, so I saw these “delays” as just that.

    After the second miscarriage in about a year of trying, my midwife referred me to an infertility specialist.  They did tons of testing on my husband and me and could find no “smoking gun”.  So they attributed the miscarriages to maternal age.  Basically my eggs were old and probably getting a little sticky.  When that happens the embryo ends up with an extra chromosome.  They figured I had miscarried because the embryos were what they call chromosomally abnormal.  Their remedy…IVF with PGD.  In other words, in vitro fertilization with pre-implantation genetic diagnosis.  Basically they make the baby, then test one cell to make sure it has the correct number of chromosomes.

    After weeks of shots, drugs, blood tests and ultrasounds, the doctors got three good embryos.  On the day of implantation, they called and informed me not to come in.  PGD revealed all three embryos were “chromosomally abnormal”. 

    It was heart breaking!  After $14,000 out of our own pocket (most health insurance does not cover this procedure) we were exactly where we started.  I desperately wanted to try again.  My husband was the annoying voice of reason.  We couldn’t afford it.  And statistics showed most people went through three (count ‘em three) rounds of IVF before getting a positive outcome. 

    This was new territory for me.  I had never wanted something so much that was so clearly out of my control.  Everything else in my life I had really wanted, I had gotten.  Not always easily, but it was comforting to know that all I had to do was work harder, study more or save more if I wanted something badly enough.  I had been praying about this since the beginning.  But now I prayed with total abandon.  I knew there was nothing left for me to do on my own.  I let go of the pressure I had been putting on myself and in many ways “gave up”.  It was very freeing.  I started concentrating on all the great aspects of not having children.  I’ll skip a lot of drama here and go straight to the punch line.  Within four weeks I got pregnant on my own with no medical intervention.

    Of course with my history, I was very concerned.  With every visit to see my midwife, I stressed.  Would they see a heartbeat, would there be a problem…when would the other shoe fall?  Well, as you know I had Cruz.  That other shoe never did fall.  He was perfect and weighed in at a healthy 9 lbs, 8 oz. 

    At that point I was content, but knew I wanted a sibling for Cruz.  Within three months I found out I was pregnant again.  Needless to say this was not in the plans….not this soon.  But a blessing is a blessing, right?  So I started my monthly ob/gyn visits with as much worry and concern as I did every time I got pregnant.  Again my doctor (a new one this time, since I had moved to Birmingham since Cruz’s birth) assured me things would be fine.  But again, I went in for my 12 week check up and there was no heartbeat.  Here I was again…very familiar territory.  This time things didn’t happen “naturally”.  So in a few weeks, my doctor scheduled a d&c (dilation and curettage). 

    I moved on and though I never put a lot of thought into “trying”, I figured it would happen again soon enough.  Sure enough it did.  On Father’s Day of this year, I surprised my husband with a positive at home pregnancy test.  I just knew this time it would “stick” and I also knew it was a girl.  But again, I proceeded cautiously.  Very concerned, at every doctor’s visit I expected to get “the news”.  Shockingly, I made it to that very important 12 week mark with no apparent problems.  WHEW!  What a huge relief.  I had never made it past this point and miscarried, so I thought I was out of the woods.  I told my boss, started informing friends and started picking out pink outfits and designing a “girlie” nursery in my head.  As I had done with previous pregnancies, I asked for all possible testing that could be done at no risk to the baby.  I am a “need to know” kind of person (or so I thought).  Within a week I went in for a nuchal translucency screening test.  This is where they measure the thickness of the back of the baby’s neck using ultrasound.  A thicker than normal measurement can indicate several chromosomal abnormalities.  As soon as I saw the baby’s neck, I knew it was not good.  Even to my untrained eye, it looked too thick.  I was right.  The geneticist told me it was almost four times thicker than the average 12 week old embryo’s neck.  He has a lot of experience in this area and I believed him when he said he estimated that my chances of having a baby with a chromosomal problem was about 1 in 20.  I left crushed.  I tried to think positively.  That meant there was a 19 in 20 chance she was ok.  But somewhere deep inside God was preparing me for what He already knew.  Two days later I did CVS (chorionic villus sampling), very similar to amniocentesis, but done several weeks earlier.  And in just 24 hours, I got the call from the doctor confirming it was Trisomy 21, a.k.a. Down Syndrome and it was a girl.

    The geneticists, genetic counselor and my obstetrician were all very caring.  They all comforted me by letting me know that the good news was, it was very early in my pregnancy…I still had all my options.  I knew what that meant, I could terminate.  Wow, that seemed like a quick fix to this “problem”.  I tried to seriously consider the option.  But I could only entertain the idea for about a second at a time.  I just couldn’t do it.  It didn’t help to learn that about 90% of women in my shoes do chose to terminate.  I thought, “They must know something I don’t know”.  But I knew from the very beginning I just couldn’t do it.  (I’m certainly not judging anyone else who may have already or who will decide otherwise.  It’s an incredibly difficult decision to make and each person must live with their own decision.)

    I immediately started researching, posting frantic “HELP” messages on blogs and message boards.  I was inundated with supportive words from other women in my same situation, moms of children with Down syndrome.  It really helped.  I just wanted to stay there forever.  As long as I was chatting with them, it seemed manageable.  As soon as I entered the “real world” I was insecure again….could I handle this? How would it affect Cruz, my marriage, my job?  But by the end of that first week, I was ok.  I slowly started telling people about the diagnosis.  It helped to voice it although at first the words Down syndrome didn’t come out easily. 

    So now I’m going to be the mom of a special needs child.  Ok, let’s do this thing!  The stars seemed to be lining up.  Not long before I learned of the diagnosis, Coach Gene Stalling’s son, Johnny, had passed away.  He had Down syndrome and I read all the touching articles about him not knowing how familiar I would soon become with the condition.  On the Friday that Sen. John McCain announced Gov. Sarah Palin as his running mate, I learned her four month old son had Down syndrome.  I could have sworn I felt the baby kick for the first time during her speech.  It was as if my baby girl was high fiving me…saying, “Cool, this is going to shed such a great light on T21 just in time for me to be born!”

    My next step according to the docs was to have a level 2 ultrasound.  This should happen at about 17 weeks into the pregnancy.  They were specifically looking at the organs to make sure they all looked good.  Children with Down syndrome have about a 50/50 chance of having a heart defect.  Mother’s intuition told me we were going to be on the losing end of that percentage too.  But according to everything I had read, the problems were almost always manageable and either healed on their own after birth or could be repaired by what is now considered routine surgery within the first six months of life.  On the day of my test, I also had to see the genetic counselor.  She lovingly told me of all the possible issues and problems my baby might have.  No big deal, nothing I didn’t already know.  She handed me tons of pamphlets and booklets.  I sat in the waiting room before my ultrasound and for the first time, looked at the pictures of those children with Down syndrome and thought, “They are beautiful!”  All the telltale signs of their condition brought me great joy instead of fear and dread as I had felt before.  I actually realized I was looking forward to having my little girl with Down syndrome.  I no longer prayed the tests were wrong, I wanted her just as she was.  “Ok” I thought, “Now I just have to get through this ultrasound.  Then I’ll know exactly what medical conditions we’re gonna have to deal with.”

    Again within seconds of my baby’s image popping up on that screen, I knew it was not good.  I had seen enough ultrasounds in my day to know what it was supposed to look like.  She wasn’t moving, there was no heartbeat.  Of course, the doctor spent several minutes taking measurements, looking everything over before he said, “I have bad news.”  I said, “I already know.”  This was one outcome that my intuition had not prepared me for.  I did not expect this.  I thought we were past this point.  The geneticist said in about 20% of Downs cases, the heart defects are too severe to sustain life.  Again, I’m on the crappy end of these statistics!  GEEZ!

    This time my doctor kindly refused to do a d&c.  She went into vivid detail about why she had chosen long ago not to do them this late into a pregnancy.  I understood.  But the alternative wasn’t appealing.  I’d have to check into the hospital be given drugs that would induce labor.  I was actually going to have to deliver this baby. 
    I’ll sum it up quickly now.  I checked into St. Vincent’s the next afternoon.  Within 24 hours it was over.  I’m pretty sure my attempts at becoming a 2nd time mom are over.  I think I’ve pushed my eggs well beyond their expiration date.  It’s only been a few days and I guess I’ll struggle for a long time trying to figure out why we went through so much on this one.  It seems like needless stress and adjustment when in the end we’d never actually deal with all the things we were preparing for.  As the chaplain at the hospital said, “God knows the reasons why.”  I know that’s true, but I’m ever so curious to know myself.  In time, I suppose, in time.