Sunday, October 26, 2008


After meeting with the chief of Obstetrics at Stanford several weeks ago, Nolan and I are having some blood work done. Mine was taken on Friday, and Nolan's will be drawn today. Both are being sent to a lab in Wisconsin which specializes in Neonatal Alloimmune Thrombocytopenia (NAIT), and in a couple of weeks we should have the final piece of the puzzle so to speak. This test will tell us whether we have a 100% chance of this happening with future pregnancies, or a 50% chance.

Best case scenario is obviously that we would have a 50/50 chance of our next baby being effected by NAIT. If this is the case, whenever I do get pregnant again I will have an amniocentesis at the beginning of the pregnancy which will determine whether or not the baby is effected. If the results show that the baby is thrombocytopenic, I will have IVIG (an immunoglobulin given over a 4-16 hour course through an IV) treatment once a week from 20 weeks on until the baby is born. At 32 weeks I would be given steroids to develop the baby's lungs, and then undergo PUBS testing. This is similar to an amnio except that instead of taking amniotic fluid, they would actually take blood from the umbilical cord. By doing this they can get the baby's exact platelet count, which will determine whether to be induced early, have c-section, etc. Because this is very invasive to the baby, there is a moderate risk of early labor (which is why they give the steroids). Most likely I would not be allowed to carry the baby past 36 weeks because the platelet count for whatever reason tends to drop faster in the last few weeks of pregnancy.

To put things in perspective:
Babies that test with a count of 50,000 and below are delivered by c-section in order to avoid head trauma and hemorrhaging. Jax was born with a count of 63,000. Each subsequent pregnancy will be more severe because my body will recognize the foreign antigens in the baby faster and fight it harder, just like it would a virus the second time I had it. Believe it or not, 63,000 is not considered severe. We are actually in the "safest" category we can be in, and with treatment we have an excellent chance of having a normal healthy baby next time around (somewhere in the 90% range). The goal (obviously) is to get the baby through the pregnancy and out of me without any hemorrhaging. Once the baby is out he/she will start to develop it's own antibodies and mine will die off (problem solved).

Hm, this was supposed to be a short blog. I got carried away!

Friday, October 17, 2008

So I guess this is it...

For those of you that have been following my blogs, we got the results from Nolan and I's blood tests today. We now know that there is a 100% chance of our next baby being effected by NAIT. There's no way around it, my body will attack the baby's platelets and without treatment the results could be very bad.

Obviously this is not the outcome we were hoping for. I had myself completely convinced that we would at least have a 50% shot at a normal pregnancy, so the call from the doctor has kind of thrown me off. I'm not really sure what to feel at this point, other than extremely thankful for the one healthy perfect baby I have. Things could be much worse... no one is telling me I can't have children, it's just going to be much more complicated and risky than I had imagined.

Thursday, March 6, 2008

The Presence of Faith - Jax's Birth Story

If ever I doubted the existence of God those doubts faded with the birth of my son, and were all but obliterated in the days that followed. I am not saying this as a parent in awe of the beautiful life they have helped to create (although I am in awe), but as a parent who was forced to realize that life could be taken away before they have ever had a chance to cherish it.
I was lucky enough to enjoy nine months of a healthy, “normal” pregnancy. I was never plagued with morning sickness, had minimal mood swings, and generally enjoyed every piece of the journey. The day we found out I was having a son was one of the happiest days of my life. I couldn’t wait to meet him. During the ultrasound we also found that one of the baby’s kidneys was slightly larger than the other. This was apparently a very common problem in boys which almost always corrected itself before birth. All this meant was that we had to return for several more ultrasounds in the following months, to be sure the problem was corrected.
Anyone that has met me knows I have very little patience, if any at all. When my eighth month of pregnancy rolled around I was ready to be done. I had had enough and wanted more than anything to hold my child for the first time. Not only that, but I was incredibly uncomfortable. It was blatantly obvious that I was packing around an oversized baby in there. At my 38 week appointment my doctor agreed to induce me on my due date if I did not go into labor on my own. As much as I wanted to be done, I also wanted to give my son every opportunity to come out on his own time. But I was drawing the line at 40 weeks, he was not going to be late if I had anything to say about it!
One week later I saw my doctor for my final check-up before being induced the following week. She asked if I was uncomfortable and without skipping a beat I answered “YES!” She laughed and decided it might be a good idea to do a final ultrasound to check the levels of amniotic fluid left for my baby to “swim” in. I was shocked at what we saw on the screen. What used to be a cute little baby floating around in a sea of fluid now seemed only to be a giant head filling my uterus. There was no space around it, and no identifiable limbs (at least not to the untrained eye). My child was so twisted and folded up I wondered why he wasn’t more anxious to come out. My doctor was able to find one, possibly two “pockets” of fluid, which in her opinion was not enough. She announced that it was not safe to leave the baby in there much longer, and that I should be induced the following evening. I had never been more relieved. What felt like and endless pregnancy was finally over!
Late the following night I was admitted to the hospital and given a drug to help thin my cervix. I was told this almost never started labor, and I should get some rest because in the morning the “real fun” would begin. It was at this moment that I joined the minority, and spent the entire night breathing through heavy contractions. Sleep was not my friend. Early the next morning I was told to take a shower because it was likely my last chance. I did so and afterwards was quickly set up on pitocin, the magic drug that would jumpstart my labor. An hour later my doctor cheerfully arrived to break my water, she wasn’t messing around, this baby was coming out whether I was ready or not.
At noon I was dilated to five whole centimeters, and according to the nurse would dilate one centimeter per hour from that point forward, I “should be pushing by 5pm.” An hour and a half went by and “just for kicks” my nurse checked my progress again. To everyone’s shock and amazement, I was fully dilated and past ready to push. I had dilated 5 centimeters in under two hours! I remember looking at my husband and suddenly feeling very overwhelmed and empowered. Our lives were about to change forever.
I gave three solid sets of pushes and with the help of the vacuum my 9lb 5oz son was born in ten minutes. I will never forget the final push and the feeling of complete emptying and instant relief. I was sobbing before the doctor even held him up to see, and cried hysterically when the nurses laid him on my stomach. I was completely overwhelmed to be seeing for the first time this person that had so much been a part of me for the last nine months. Words cannot describe the love I felt. However, these feelings were almost instantly replaced with intense fear. My son wasn‘t crying. I had seen enough “Baby Story” to know that if he wasn’t crying, he wasn’t breathing. In the distance I heard my doctor explain that in the process of being born so quickly, the umbilical cord had wrapped itself around his neck. The shock of his hasty arrival was making it difficult for him to catch his breath. The nurses whisked him into the corner to clean him up and get him breathing. A few moments later I heard a short cry, and then again silence. A parade of nurses followed by my husband marched out of the room carrying my newborn child, while I lay in bed paralyzed by the epidural. Soon the room was empty and I was left alone, my body suddenly shaking from the shock of the trauma it had just endured. Soon a nurse came by to check on me, bringing my sister with her. The nursery called and informed us that my son was now breathing just fine on his own, they were cleaning him up and he would be back with me before I knew it. I lay nauseous and shaking uncontrollably, waiting in a drug induced haze with my sister by my side. I eventually dozed, and awoke to my husband entering the room holding our son. He looked so full of love, so proud, and completely enthralled with his new baby. He handed over our child, “Jax,” and I held him for the very first time. A few family members came in, and I was suddenly once again overwhelmed by the love and protectiveness I felt. Relieved, I was allowing myself to feel the joy that was cut short so quickly after his birth. And then the phone rang, Jax was needed back in the nursery right away. There was no explanation, simply “bring him back immediately.” And so as quickly as he had arrived, he was taken away again, my joy once again replaced with intense fear. Our family filtered out of the room, my husband returned the baby to the nursery, and I was once again alone. Two hours went by with no answers. Nurses came and went, insuring me that everything was alright; this was all “standard.” It was when my husband finally returned without Jax, that I knew something was very wrong.
Initially when Jax was born my doctor thought he looked “a little pale,” and therefore requested a round of blood work be done as a precautionary measure. Not expecting anything to be wrong, we were all very caught off guard to find that Jax had a severely low blood platelet count (64,000 as apposed to the normal count of 150,000 and above). Mere hours after his birth, my husband and I were faced with information regarding blood platelet transfusions, possible head trauma, and blood that would not clot. To say we were overwhelmed and confused is a severe understatement. Jax was immediately admitted to the Infant Special Care unit, where luckily he was treated by the best Stanford doctors available.
As soon as I was able to hobble my way down the hallway I visited my son in the NICU. He was lying in an incubator, wires and monitors strapped all over him, and blood stains on his blanket and clothes. A nurse was in the midst of taking another blood sample when we walked in, and because his blood was not clotting it had ended up all over everything. I will never forget that nurse. She announced that she was hoping to be done and have him cleaned up before I got there, then turned, took one look at my face and said “do you need a hug honey?” And so I crumbled into the arms of this stranger and sobbed uncontrollably. She was the first in a long line of wonderful, compassionate nurses that gave us the peace of mind that our son was in good hands. That evening the results of Jax’s second blood test came back with a platelet count of 37,000. They had dropped by almost half in a matter of hours. When the count sinks to 20,000 or below doctors begin to be concerned about spontaneous bleeding. So much as a sneeze could bring on serious hemorrhaging. Jax was creeping dangerously close to the 20,000 mark. The pediatrician on call immediately started Jax on the first of what would be two 6 hour courses of an immunoglobulin given in a tiny IV (IVIG). Her belief was that there was an antigen present in my blood that had spent the last nine months attacking and destroying Jax’s platelets. Now that he was out of my body he was beginning to produce his own antibodies and mine would eventually die off. If this was true the immunoglobulin would boost the production and his count would climb. All we could do is wait. In the mean time a blood sample was taken from me to test for the suspected antigen.
That night was the longest night of my life. I slept fitfully, dreaming that my child had stopped breathing in the nursery and I wasn’t there to revive him. By the first light of morning I was waking my husband to go to the nursery and check on Jax. We arrived to the good news that over night, our son’s platelet count had risen to 84,000. The immunoglobulin was so successful that the pediatrician didn’t think the second dosage would even be necessary. Later that afternoon an ultrasound was performed on Jax’s head to be sure no trauma or uncontrolled bleeding had occurred during delivery. I stood by nervously watching the ultrasound screen looking for anything that resembled internal bleeding. Thankfully nothing was found. Jax’s platelet count continued to rise throughout the day and night, and in the morning we were given the green light to take our son home. He would still need to have his blood monitored, but for the first time we could take him out of the NICU and hold him without the wires and monitors beeping.
It was only in the weeks that followed that my husband and I began to evaluate the series of events that led to Jax’s birth. It was then that we realized how incredibly lucky we are. Neonatal Alloimmune Thrombocytopenia (NAIT) is a condition that effects very few babies at birth, and is rarely caught in those that it does. In 90% of births where the infant is found to have low platelets the cause is the presence of a specific antigen in the mother’s blood which attacks the child’s platelets. 2% of women carry this antigen. I was the first case my doctor had treated or encountered in 11 years of practice. Because the mother’s body destroys the baby’s platelets from the beginning, there is always risk of hemorrhaging even in utero.
The more we learned about NAIT the more evident it became that Jax was being looked out for from day one. Had there been any hemorrhaging to Jax during his life in the womb it would have been detected during one of the many ultrasounds performed to watch the development of his kidneys (which did inevitably correct themselves).
Had there not been low amniotic fluid in my uterus I would not have been induced a week early, his platelet count would have continued to plummet, increasing the risk of trauma during birth.
If I had not pushed Jax out as quickly as I did the cord would most likely not have tangled around his neck, and he would have been born screaming and seemingly healthy like any other baby. He would not have looked pale, and the precautionary blood work would never have been done. Jax would have been circumcised and given his shots the following day, with such a severely low platelet count that the doctors would most likely not have been able to control his bleeding. It terrifies me to think how low his count would have sunk without the immunoglobulin he was given. We were incredibly blessed to have a quick and easy delivery, because the longer I pushed the greater the risk of head trauma became.
I learned several things from Jax’s difficult start to life. Cherish what you are given because you never know how quickly it can be taken away. Trust in the higher power of God, and even when scary situations present themselves (such as abnormally sized kidneys or low amniotic fluid), keep faith. Because sometimes what seems to be a problem, may actually be serving a greater purpose, it’s only when the bigger picture is revealed that we realize the importance of faith. And so with every sleepless night, and every unsolvable cry, I think about how lucky I am to be holding my child and hearing his cries, because not hearing them is the worst feeling I have ever experienced. It is because of this that I will always value the presence of faith.

Jax in the NICU receiving IVIG treatment - 9lbs 5oz, 20 1/2"