Santa Clara County, California, USA
The Presence of Faith
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.
When Jax was about four months old (after several rounds of genetic testing) we received the news that there was a 100% chance of any subsequent pregnancies being affected by NAIT. Not only would future children be affected, but they would be affected more severely. This was news that was incredibly difficult to handle. As a mother, my job is to protect my children, from the point of conception on. I cannot put into words the mixture of emotions I was (and still grapple with) feeling; failure, inadequacy, and the terribly image of what my son had to endure because MY body was attacking him. While desperately searching the internet for up to date information on NAIT, I came across the yahoo support group. These wonderful ladies, my sisters, gave me the courage to get pregnant again.
When Jax was almost two my husband and I began trying for another baby and almost instantly became pregnant with another boy. I can’t pretend I wasn’t afraid, deep down to the core afraid, but I was also more determined than I had ever been in my life. I was going to protect this little man if it killed me. I must have said to my high risk doctor over and over again “pump me up with whatever drugs you need to, just get this baby out alive and healthy.” I started IVIG treatment once a week at 16 weeks pregnant. Each infusion lasted approximately six hours, and essentially wiped me out for the whole day. I also began taking daily prednisone at 20 weeks which brought me to being border line diabetic. I pricked my finger three times a day to check my glucose levels and was fortunately able to keep it under control with diet and exercise. My doctor sent me for non-stress tests once a week for the entire third trimester, and I had monthly ultrasounds to check for hemorrhaging for the entire length of the pregnancy. The nurses all knew me by name (even the ones I had never met), and my doctor joked that they should set up a permanent suite for me at the hospital because I was there so often.My second child, “Maddox” was born via scheduled c-section at 36 weeks. Because he was not full term, there were concerns that his lungs may not be fully developed.
Although our nerves were pretty shot, we felt confidence in the team of doctors and nurses surrounding us that day. Every person that was involved in Maddox’s delivery, right down to the anesthesiologist, had copies of my complete chart (including Jax’s history). They were all given a print out from a medical journal providing a run down of NAIT. My OB said they were more prepared for my surgery than any other she had ever done… and it showed!
After getting prepped and numbed in all the right places, Nolan was brought into the OR to sit next to my head. Before we knew it my doctor was saying the words I had been waiting to hear for 8 months; “here comes your baby!” She pulled his head out, and before the rest of his body had left my stomach he was screaming. I have never heard a more relieving sound in my life. Screaming equals breathing. I cried harder than I have cried since Jax was born. It’s impossible to put into words the amount of pressure and fear that was lifted from my body with Maddox. Physical, mental, and emotional pressure that I had been carrying for months, finally gone. Well, mostly gone anyway. He was out, but we still didn’t know how successful the treatments had been. Because he seemed physically stable, the nurses allowed Nolan to hold him by my head for a little while. I gave him plenty of kisses before he was whisked off to the NICU for testing. As I was being stitched back together, the nurses explained to me that they found only one small patch of petechia (broken blood vessels that can sometimes signal internal bleeding) near his groin, but insisted he seemed healthy otherwise. By the time I was wheeled to recovery the numbers were back and seemed promising. Maddox’s platelet count was 92k, 30k above what Jax’s were at birth. I’ll admit, they weren’t as high as I had hoped for, but they were still great counts. And better yet, an ultrasound performed on his head found no signs of brain bleeds. The pediatrician let us know that they would test his platelets again in six hours, and if they continued to climb over the next few tests he would be allowed to room with us.
Unfortunately, like dejavu, six hours later his counts had dropped down to 50k, and then 33k six hours after that. It was Jax’s delivery all over again, with one thing majorly different. We were in control. I decided after Jax was born that if we ever had another child I was going to be armed with as much information as I could possibly get my hands on. I absolutely refused to be in the dark again. So with the help of hematology we came into Maddox’s birth with a game plan. If his counts were to fall below 50k but above 30k they would administer IVIG (the same infusions I had been receiving all the way through the pregnancy) and test again an hour after the infusion was complete (infusions take about 5-6 hours). Because Jax only needed one round of IVIG our hopes were that Maddox would only require the same. If Maddox’s counts dropped below 30k they would transfuse with the donated platelets we had standing by. My sincere gratitude to the three donors that gave their platelets for my son… Thank God they weren’t needed! After one round of IVIG Maddox’s platelets climbed back up to what they were at birth. They dipped again a few hours later, but climbed steadily from there on out. By our third day in the hospital he was released to our room and was able to spend the remainder of our stay with us. We were all released after five long days in the hospital.
What I didn’t realize was during the entire pregnancy it was as though I was holding my breath, just waiting for something to go wrong. Once it was over I could breath. Best of all I could enjoy this little person we had created. Sometimes I can’t help but wonder what I did to deserve one miracle, let alone two… but I have a feeling God has great plans for these boys. I’m so blessed to be their mother; I truly would walk through fire for them.