Child Loss:

For those seeking survival and joy after child loss.

Sunday, March 27, 2016

Serial Loss



Miscarriages: 

If I were to get pregnant again, I would be considered extremely high risk.  As I've closed in on forty, pregnancy in the first place has gotten harder and harder.  The fact that I am approaching forty is another risk factor.  And the fact that I have had 14 miscarriages, 13 of them in a row, several of them medically proven, makes me just about highest of all but not quite.  The farthest along I was for any of those was 12 weeks.  Most were six weeks and before.  Some of those, I would take the test and within a few days, I'd start to see blood.  One of those, I had to have a D&C.  That was rough.  Another, I took drugs to pass the baby to avoid another D&C.  I wouldn't recommend that at all.  I lost so much blood, I was seeing black spots and nearly passed out.  Even after several hamburgers and an iron pill, by the time I was rushed to the ER, I was only on the low end of normal.

These miscarriages really had an impact on me.  The worst were those where I made it as far as looking at an ultrasound, only to hear those dreaded words, "There is no heartbeat."  The first time, the one before Alamanda came, about killed me.  I'd never heard such horrible words in my life.  I've since learned there are more painful words like, "The baby isn't breathing" and "We couldn't revive her."  I've heard other more painful words since then as well.  But the sight of ultrasounds has become painful since I haven't seen a single live one for me in over six years.  Some of those miscarriages launched me into some of the deepest, darkest bouts of depression of my life.  I have the deepest empathy for those who have miscarried once.  It's not a pain I would wish on anyone.  

I went through all of the recommended tests for serial loss short of genetic testing with nothing to show for it but medical bills.  No answers and no rainbow baby.  I have stopped trying.  I have prayed about it and felt it's okay to stop trying.  I can cherish the two live children I have and be thankful for them.  I can also look forward to the resurrection to hold all of them, including those I never 



Kell Antibody:   

I said this serial miscarrying makes me almost as high risk as is possible.  There was something I discovered during the pregnancy with Alamanda that I had never heard of before.  My husband is homozygous for something called Kell antigen.  During my second pregnancy, I became sensitized to it and had a Kell antibody waiting for Alamanda as she grew inside of me.  

When I started researching Kell, I couldn't find much in the way of useful information, only support boards full of traumas and horror stories or doctors' words that didn't make sense to me.  I did see a study that followed six women with Kell who got pregnant with six babies, and all six babies died before the advent of high-tech modern ultrasounds.  For those who haven't heard of it--and there were many when I dealt with it, including nurses--it's a lot like RH factor where the mom's immune system sees the baby as the enemy, as a disease.  The mom's body attacks the baby, leaving the baby anemic.  If the situation is not caught, the baby could end up dead.  And the truly scary thing about this is that one day, the baby could be fine.  Two days later, the baby could die of anemia.  

There are preventative shots to be taken for RH.  No such luck for Kell.  All that can be done, or all that could have been done six years ago, was careful monitoring via elaborate ultrasounds, several per visit, to make sure the blood flows freely through the baby's brain.  The good news is Kell does not impact the baby until after about the sixteenth or seventeenth week.  Now, this is information that I was told three years ago when I was looking at it as a possible cause for my serial miscarriages.  I was told it could not be the cause because the losses were too early.  

Another bit of good news about this is that only 8% of the human population has Kell, and of those, all but 2% are heterozygous, meaning every pregnancy has only a 50% chance of being affected by the Kell antibody.  Here was the nasty part for us: we won the genetic lottery.  We were of the 2% who were homozygous.  We should have had all sorts of problems with anemic babies after the first.  My second child should have been affected by Kell since I should have been sensitized with the first pregnancy, but she wasn't.  Kell wasn't even in our sites until baby three.  The bad news is the only two options for a baby made anemic by Kell are both dangerous: transfusion or induction.  Induction isn't so bad if the baby is fairly far along but very high risk for an early baby.  

                                                 (Painting: "Security" by David Bowman)

Hope: 

And here's the hope for mommies and daddies struggling with Kell: it didn't affect Alamanda's pregnancy at all.  I was there at the specialist's office every week and a half from week 18.  Each visit, we expected problems.  I worried nonstop about stillbirth.  But Alamanda was protected.  Even the specialist turned to me, mystified, and asked how is this baby not affected?  I can only say she was preserved.  She was induced to spare her more danger, tiny but perfect at 37 weeks.  We lost her four months later in an accident.  But those four months were a true blessing, and I'm thankful for them.  

Like I said, this information may be dated.  It is not intended to replace a doctor's advice or words.  I just thought I'd throw this out there into cyberspace for those who struggle with serial miscarriages and Kell.  You are not alone and there is hope.  The most important hope and protection for those struggling with the Kell antibody, other than a doctor's help, is faith.  I pray for those facing issues of either Kell or serial miscarriage.  But one has to understand faith and prayer in God don't always work like we'd like them to work.  I've been praying to have a live baby for years and have finally had to find peace and gratitude for the family I have.  Sometimes, we have to submit to the Lord's plan for us.  It's called "but if not" faith.  I would love to have a baby, but if not, I will still believe and obey.  And it can be hard.  Feel free to contact me if you'd like a listening ear.