Mar. 4, 2007 - A New Life; An Unknown Path

For the next 7 blog entries, I will be sharing with you the story of my pregnancy with my son.  If you recall from reading about our daughter's birth, after she was born with a severely low platelet count it was suspected that my husband and I had a platelet incompatibility.  This was later confirmed through genetic testing.  The doctor's said this was not a reason to stop having children. And we got pregnant with our son.  And then the curtain was pulled back the full truth was sitting in the room smirking at us. We would have our baby - probably.  It would not be easy - most assuredly.

The way I will tell this story is through the letters that I wrote home to my friends and family to keep them updated during my pregnancy .  They are unedited and reflect the feelings, thoughts, and impressions I had just as I wrote them down at the time.  Sometimes, you will see that I have stuck a note in the midst - a clarification, explanation or thought that has come to me while reliving these moments as I type them out here.  I will put them in [brackets], black font, and italics. When you see that - it is today's me.  So let's get started, shall we...

June 6, 2001
Letter #1 - Sharing the News

Dear Family and Friends,
Russ and I are due to have another baby in January.  Word travels fast so I don't expect this to be news to most of you.  If you didn't know, well... SURPRISE!  I will be sending these updates throughout our pregnancy to keep you informed of how things are going.

As many of you know, Russ and I have a platelet incompatibility that causes my body to attack the platelets of my growing baby. This obstacle makes us high-risk for losing the baby if the situation is not treated properly. We will be 7 weeks along tomorrow and I know many people think you shouldn't tell anyone before the 12th week - which is when the chance of miscarriage drops dramatically. But our whole pregnancy is one big unknown.  In fact, if we make it past week 12, there is actually more danger as the weeks progress.  Russ and I believe that the more people who know about our situation, the more people we will have praying for us and the more people to support us if anything goes wrong. We want you to be a part of this wonderful journey - one that has an unknown ending.  So, I hope you look forward to these updates.

Let me explain briefly what our gentic problem is for those of you who have never heard or who have never really understood it.  Russ' platelet are marked with PLA1 and PLA1 "markers." Mine are marked with PLA2 and PLA2. So, if you remember your genetics from biology, our babies will always inherit PLA1 from Russ.  Since my body does not have PLA1, it will see the baby's platelets as "foreign" and produce antibodies against them. These antibodies will cross the placenta and "kill off" the baby's platelets. This is why Victoria, though she was very healthy otherwise, was born with a very low platelet level.  Her birth was a miracle in that she was born (2 weeks early) when her platelet level was near fatal but, after having gone through a 16 hour labor, she had no more serious complications than slight bleeding under her skin. Until she was born, we had no idea there was a problem. A platelet incompatibility between Russ and I was suspected and was later confirmed through genetic testing.

[Our platelet incompatibility - Neonatal Alloimmune Thrombocytopenia (NAIT) - is sort of like Rh incompatibility in pregnancy.  However, unlike Rh incompatibility, NAIT can occur in a first pregnancy and they have not yet developed something as simple as a shot to prevent it. Estimates are that only 1 in 1,000-2,000 live births are affected by NAIT.]

Babies with low platelets are at risk for cerebral hemorrhaging and death.  Fortunately, there are treatments available today that give us a good chance for a healthy baby.  We found out the basics of what these treatments would entail at our first doctor's appointment on May 25th.  Our prenatal care is being handled by the Medical University of South Carolina (MUSC) Prenatal Wellness Center.  The practice has 6 doctors, all of whom specialize in high-risk pregnancy. At our first visit, they confirmed my pregnancy at 5 weeks, gave me a due date of January 24th and showed us the gestational sack by ultrasound.  Unfortunately it was too early to  see the heartbeat. We also had an opportunity to have a long conversation with one of the doctors. We discussed my risk factors, the platelet problem and our treatment options. Other than the platelet issue, the doctor said I was very healthy and had no other risk factors, giving me a great chance for a successful outcome.

The basics of treatment (as I understand them at this point) are this: Starting in week 23, I will go weekly to the hospital to have intravenous immunoglobulin (IVIG) therapy. There are apparently not any real side effects to this treatment [as we continue on, you will see just how wrong they were about this] but I will let you know when I get more information about it. The difficultly for us will be that MUSC is 2 hours one way from my house. I will need to find people each week that can drive with me and watch Victoria. So the logistics might be hard but I have 16 weeks to get it together!  One surprise to us was the enormous cost of the treatments - about $10,000 a week! Fortunately, we have excellent insurance through Pepsi Co. It won't eliminate all of our financial responsibility but it makes it much more manageable. You can be praying that nothing happens that would cause Russ to lose his job and, in turn, his insurance.

We have been told that the IVIG will virtually elminate the chances of the baby's platelet levels getting low. [Great naivety on the part of people who try to put everybody in their box of clones.]  To be on the safe side, however, we have been given only two options for delivery. One option is to schedule a Cesarean Section.  Since they do not really know how much labor a baby with low platelets can endure and they won't know what the baby's platelet level is, a C-section will elimate the potential risk for the baby of labor and delivery.  The other option is to find out the baby's platelet level at a certain gestation and if the doctors feel confident the baby can go through normal labor and delivery, I will be induced immediately. Finding out the baby's platelet level is done by cordecentesis (or PUBS). This procedure is similar to an amniocentesis, except instead of taking amniotic fluid, they take blood from the umbilical cord. As it does involve a needle puncturing the amniotic sack and then the umbilical cord, it is risky, with a slightly higher risk of loss than an amnio. [Thinking back, I know we were also given the option of checking the baby's platelet levels with PUBS throughout the pregnancy. However, given the risks, we declined the PUBS until I was very close to term. Then, if anything went wrong, they could deliver the baby immediately.]

I know many of you are thinking, what about Victoria? Didn't she have the same problem and she turned out fine without any prenatal intervention? This is a question we get all the time. People want to know why all these treatments and precautions if Victoria made it out OK. Well, a couple of things to address on that. First, the incredible human body. Once your body has made antibodies to something, it attacks quicker and with more force the next time it encounters that "enemy." So, this baby will be at risk earlier than Victoria was. The next thing is that Victoria's platelets were low and she did spend a couple of days in the NICU having platelet transfusions.  Without treatment after her birth, she would not have lived. The very fact that she made it through delivery with severe thrombocytopenia (platelet levels <60,000/mL), but without inter-cranial hemorrhage, is a miracle. We  give the credit to God for that and for the medical science that allowed us to identify the cause of her low platelet levels (something that might have been  impossible less than a decade ago).  So, of course, we are going to take advantage of all the incredible prenatal care available to us through MUSC to give this next child the best possible chances for a healthy birth.

We believe that God can work miracles through challenges like ours and we ask that you be in prayer for our physical, emotional, and spiritual well-being as we face the difficult, yet joyous, months ahead.

...up next- a very difficult beginning