Thankful

"Mama!  Mama!".  She calls me to her room.  I have already put her to bed and I know I shouldn't go back in.  But I can't resist her call to me, my only surviving child calling my name.  I guess this is why they say only children are spoiled.  I go to her and we cuddle and rock and I tell her a story.  The story of a little girl who wanted to grow up, get married and have lots of babies.  I tell her about how this little girl played with dolls and dreamed that one day they would be real babies.  And I tell her of how one day God blessed this little girl with a real, live baby of her own, another little girl, with blue eyes and blond hair and fair skin, a beautiful smile and contagious laugh.  I tell of how this little girl brings her mommy so much joy and how special she is and how she was put on this earth for a very special reason.  I hug her tight.  I kiss her all over and with a choked voice and tears in my eyes I tell her how much I love her.

Two days later I sit with Jason in his office under fluorescent lights.  Everyone else has gone home.  And we wait.  We wait for a call from Dr. Sher from Las Vegas.  He calls.  He has gone over our records.  He verifies that I have had five miscarriages.  I correct him and tell him no I have had six.  He apologizes.  He did not see the one I had to write in the margin because there were not enough lines on the form for all my pregnancies.  He goes on to explain our problem in more detail.  We have Immunologic Implantation Dysfunction, of which there are two kinds, autoimmune and alloimmune.  Alloimmune is worse and more difficult to treat.  That is the one we have.

This is very scientific and tough to explain and we are still trying to figure it all out ourselves, so bare with me.  Much of this is paraphrased from Dr. Sher's article found here.  Every person has two of a specific gene called the DQ-alpha gene, one from their mother and one from their father.  Alloimmune Implantation Dysfunction (AID) occurs in couples who have a DQ-aplha gene similarity.  As I stated in my previous post I have increased Natural Kills Cells (NKC).  I don't just happen to have an increased number of these.  I have more of them as my body's response to carrying so many DQ-alpha similar embryos.  This is how any woman's body would respond to similar DQ-alpha embryos.  These embryos rev up my immune system and actually cause me to have more NKC than normal.  Each pregnancy is different and the severity varies as Dr. Sher states, "The severity with which this occurs determines whether total implantation failure will occur, or whether there remains enough residual trophoblastic activity to allow the pregnancy to limp along until the nutritional supply can no longer meet the demands of the pregnancy, at which point miscarriage or pregnancy loss occurs."  This was the case with my little 16 week baby.  It wasn't as severe so the pregnancy "limped along" all the way to 16 weeks before I finally miscarried.  The surgeon said the baby's placenta and umbilical cord was "a mess".  This is characteristic of AID because way back at the beginning of that pregnancy my NKC was attacking that baby and although implantation occurred, it was not a true healthy implantation and therefore a perfectly functioning placenta was not able to form. It formed enough to get me to 16 weeks but it could not sustain the pregnancy to term.  And even if it had the baby likely would have been born with severe handicaps due to lack of nutrition throughout the pregnancy.  That is the scary thing with AID, you can lose a baby at any time, early in your first trimester, in your second or even in your third.  You could deliver a stillborn or if you finally do have a baby, the baby may not be healthy due to a poor functioning placenta during the whole pregnancy. 

So how is Riley here you may wonder, as we did.  I asked Dr. Sher that question and here is the amazing answer.  I have our test results right here in front of me.  They say, "Maternal DQ-alpha 102 and 201.  Paternal DQ-alpha 102 and 303."  As you can see, Jason and I share 102 but not the other number...we are a partial match.  This is good.  If we were a full match there would be no way at all we could ever carry a baby to term.  Even Riley wouldn't be here.  So 50% of the time we will get a baby that is not a DQ-alpha match and 50% of the time we will.  The matching ones will never survive.  The non matching ones (like Riley) can survive with treatment.  The problem is, now my NKC is so reved up from so many pregnancies with DQ-alpha matching embryos that my increased NKC will attack even the non matching ones.  In fact every time I get pregnant it just gets worse and worse.  It's like a snowball that builds and builds as it rolls down the hill.  So all this time we thought if we just kept trying another baby would stick when in fact it was making the problem worse.  Riley is here for two reasons, number one - she is not a DQ-alpha match and number two - she came along early enough in this process (she was only my third pregnancy) that my NKC were not high enough yet to fully attack her.  And so she survived.  That being said, I have always had a gut feeling that we almost lost her too. I could never explain why for sure, but I just knew it.  And Dr. Sher confirmed that on the phone last night.  I likely had some increase in NKC when I was pregnant with her, a result of my first two pregnancies that started those NKC to elevate but miscarried because they were likely DQ-alpha matches.  So these NKC were probably attacking Riley a little, not enough to cause her to miscarry and thank God, not enough to cause any major negative effects on her (that we know of so far) but there were signs that this was happening.  One - she did not move much the whole time I was pregnant with her, evidenced by my many frantic trips to the ER I took when pregnant with her, Two - She failed a Biophysical Profile Ultrasound Test at 38 weeks for lack of movement, which got us promptly sent to the hospital for an emergency induction (Which very likely saved her life.  Thank you to my amazing OBGYN for being smart enough to recognize something wasn't quite right and induce me early), Three - she was small for her gestational age when she was born, 5 lbs, 14.9 oz, suggesting she may have had a small restriction of oxygen and nutrients and Fourth - she did have trouble learning to speak which may be because of the environment in the womb and lack of nutrients to her brain while she was developing.  So I must stop for a moment and say there are no words to describe the sinking of my heart when Dr. Sher said all this.  The thought that I could have lost her too, at full term is more than I can bare.  I have gone into this mode of feeling just numb, so overwhelmed with all this info that my mind and heart just can't take it and to protect myself I have just gone numb.  But so many times over the past few days I just start to weep uncontrollably out of nowhere as the sudden thought darts into my mind of  the awful tragedy that could have happened.  I love her so much.  There isn't a thing in this world I wouldn't do for her and she perhaps was almost a victim of this awful diagnosis too.  But now I know why she made it and the others didn't and why she had trouble learning to talk and it is an absolute miracle that she is here and that she is healthy and that she was able to overcome her speech delay.  She is a fighter.  I have never been more proud of my little baby girl!

So we sit, Jason and I, after four years, we finally have a diagnosis and a doctor who knows what he's talking about and doesn't just say he doesn't know.  We sit with this new information.  We are overwhelmed.  I look at my husband sitting across from me, elbows on his knees, head resting in his hands, sharp breaths causing his back to sharply rise and fall....and I know.  He is so done.  He is so overwhelmed with all of this, with his job.  He is close to his breaking point.  My cries fill the quiet empty office and we sit there, cars and life whirling on by outside.  We hold each other and cry.  There is nothing wrong with me.  There is nothing wrong with Jason.  There is something wrong with the two of us together.  Had we never found our way to each other and married other people, we would not be having any of these problems.  It seems like a cruel joke. 

Where do we go from here?  We have an appt with Dr. Sher in December and we will discuss that then.  There is treatment.  We would need to do IVF and test the embryos.  Once we have several healthy embryos, they will transfer only one at a time to my uterus.  Usually with IVF they will transfer more than one but with this diagnosis they only transfer one for fear that if one is a DQ-alpha match and the other is not, my body will still attack them both and I will lose the non-matching one along with the matching one.  In order for the baby to survive there must be only one non DQ-alpha matching embryo.  There is no way to know that or test for that.  It is up to God and nature.  So we hope and pray that we get a non matching one.  If we don't, it will miscarry despite treatment.  But assuming we get a non matching embryo at some point, then I undergo treatment which is Intralipid therapy combined with a steroid Prednisone.  These help reduce my NKC activity.  He says we may have as good as an 80% chance of carrying the baby to term if we do treatment and have the right embryo.  But its a 50/50 chance we will get that right embryo that doesn't match.  Dr. Sher left us with a word of caution, "Do not get pregnant again.  You WILL miscarry, putting yourself at risk and making the problem worse.  Don't get pregnant."  We can never again afford to get pregnant on our own.  This treatment is essential for us to carry a healthy baby to term.  I know this is a long post and is probably overwhelming to all of you reading it as it is for us.  But there is really no short, easy way to explain this very complicated diagnosis.  If you are following this blog and have repeated, unexplained losses and have been tested for everything and tests are all normal, you may want to consider testing for these immune related problems. Tests are expensive and not covered by most insurance, but having these answers is huge for us and perhaps for others out there too.  Read Dr. Sher's article (link above).  He explains it far better than I do!

Thanksgiving is tomorrow.  One year ago I was 15 weeks pregnant as I ate my turkey and stuffing.  I remember laying on the bed in our hotel room (we were out of town for Thanksgiving last year visiting family) using my fetal doppler to check my baby's heart beat.  I found it right away.  It was loud and strong, like galloping horses.  Riley laid her head on my tummy.  My mother in law came in to hear the baby's heart beat.  One week later my baby was dead.  I can't believe it has already been a year since my life took a nose dive off Mt. Everest.  This has been and remains to be the hardest year of my life.  We are supposed to be thankful in all things.  Honestly, I'm not.  I am not thankful for any of this.  But I know despite all this, I do have so much to be thankful for.  Number one, Riley.  Outside of this problem, health.  A home I love, a job Jason is excelling at, a husband I love (we must be soul mates...we are after all SO ALIKE!) and answers, finally answers.  I didn't want to celebrate Thanksgiving this year.  I don't have the energy or the spirit for it.  I told Jason I just wanted to go out to dinner somewhere and pretend this day wasn't happening.  But instead, I bought a turkey today and I will cook all day tomorrow and I will host the people I love and I will get through it.  I have been reading to Riley about being thankful and eating turkey for three weeks and that's exactly what we will do.  I do it for her, I do it for the people I love, I do it for all six of them.  I do it because I am thankful and life must go on.

I love you always and forever and no matter what.