By Cheryl, Herndon, VA USA
PROM at 15 weeks + 6 days. Delivery at 24 weeks + 4 days.
Story added: 2013-10-13

I had gone though the loss of a baby in a previous pregnancy due to premature birth at 20 weeks, so when I found out I was pregnant this time, I was ecstatic but also very anxious. My doctors assured me, though, that I had no reason to believe I wouldn't have a normal pregnancy this time around. At 15 weeks, 6 days I had just come home from the grocery store and was putting groceries away when suddenly I felt fluid gushing out. It was a series of small leaks, so I just thought I was wetting myself as a side effect of being pregnant, so I thought nothing of it. Later that week, I already had my 16 week ultrasound scheduled and I was so excited at the prospect of finding out the sex of the baby. After the technician completed the ultrasound, she told me the baby looked fine and was the right size for its gestation. But, she said my amniotic fluid levels were low and she would send in the doctor to talk to me about it. When the doctor came in, he took a quick look at the ultrasound, and I knew by the look on his face that something was terribly wrong. That's when he dropped the bomb. I was told that I would either go into labor within a week or two and lose the pregnancy, or the baby would die in utero because of the risk of the baby compressing the umbilical cord, or if I was somehow able to carry the pregnancy to viability, which at that point was 8 weeks away, the baby would be doomed to suffer from premature birth, immature lungs, limb deformities, possible brain damage and a host of other related complications, and would have a very low chance of long-term survival. The doctor advised us to consider termination because of my risk of infection, but having already lost another child, I just could not bear the thought of intentionally killing my baby. I had already seen the baby by ultrasound, heard the heartbeat and could feel him or her moving inside me. There was no way I could fathom ending its life on purpose. So, I decided to move forward with the pregnancy. From there, it was just a waiting game to see what would happen because the doctors could not offer me any treatment or hope. My husband and I were devastated, but after a few days of grieving, I decided the best thing to do was to arm myself with as much information I could get a hold of. I searched for stories of other moms who had been through this looking for any reason to hope. I looked through medical research reports and searched the web. Most of what I read confirmed the grim prognosis the doctors had given me, but there were the occassional miracles that I came across that gave me the strength to keep going. At first the doctors didn’t even think it was worthwhile for me to even go on bed rest because they thought the situation was nearly hopeless. But as the weeks went by and nothing happened and there was still a heartbeat, I became more and more hopeful that I might make it to viability. At that point, I was being monitored twice a week, and although the heartbeat was strong each time, I never had any measurable amniotic fluid. I even had an amnioinfusion done the week after my initial diagnosis where they injected fluid into me that was dyed blue, and it just flowed right out of me. Once I had reached 20 weeks, I decided that I wanted my baby to be delivered at the best possible hospital knowing that he would be born premature, so I switched to a new OBGYN that could deliver at INOVA Fairfax Hospital. I had an ultrasound that week that showed that not only did I have no measurable fluid, the baby was now way behind in growth and was measuring in the 6th percentile. So, now I had growth restriction to add to my list of things to worry about. But, still I perservered. I was admitted to the hospital once I reached 23 weeks and could do nothing but wait for nature to take its course. I was told that once I went into labor there was nothing that could be done to stop it because with my membranes ruptured, there was an extremely high risk of infection so the doctors would be forced to deliver me to protect my life. A week and a half after being admitted to the hospital, I went into labor and delivered my baby boy, Nathan Sunil Chotrani, via c-section on January 10, 2013. He was 24 weeks, 4 days gestation weighing 1 lb 2 oz. Even when I was on the delivery table waiting for my baby to be born, I was reminded again of how unlikely it would be for him to survive. An ultrasound a week before he was born estimated that he would weigh about 400 grams at that point and I was told that babies are generally viable only once they reach 500 grams regardless of the week of gestation. However, the estimate was wrong and Nathan weighed 520 grams at birth. Then the NICU journey began. After all the horror stories I was told during my pregnancy, I wasn’t sure at first if little Nathan would make it. In his first day of life he suffered from respiratory distress and a pneumothorax (a collapsed lung), but miraculously he overcame those challenges and by day 3 or 4, his oxygen saturation levels had risen to the high 90s on little oxygen support and the doctors were already talking about transitioning him off the ventilator. But then things took a dramatic turn for the worse. At one week of life, we were told that Nathan had suffered a bowel perforation (a hole in his intestines). The doctors informed us that because of the high amount of bacteria in the intestines, he was at very high risk of becoming septic and that approximately 40% of babies with a perforated bowel would not survive. He was placed on every possible antibiotic and all we could do was wait to see whether his tiny body could mobilize his immune system enough to fight the infection. Nathan became very sick and it was touch and go for the next several days. Somehow, his body managed to self-heal the hole in his intestines and he began to get better. He did eventually need surgery when he was about 2 lbs, but he did well and soon after that he was finally able to be fed the breastmilk I had been diligenty pumping for him. About a month after the surgery, he came off the ventilator after having been on it for two months. Then another problem came up, with his eyes. The oxygen he had been receiving since birth damaged the blood vessels in his eyes and caused him to get a disease called retinopathy of prematurity (ROP), which is very common in preemie babies especially micro-preemies. Nathan had a very severe form of the disease and we were told that even with laser eye treatment, he would have about a 50% chance of going blind. Fortunately, there was an innovative new treatment available that had only been around for about a year and had promising results. The treatment was a medication called Avastin injected directly into the eye and it stops the growth of the abnormal blood vessels and pushes the disease out from the center of the retina to the periphery so that his central vision could be protected. He did end up receiving laser eye surgery as well several weeks later but since the Avastin had already reduced the severity of the disease, the laser was much more effective than it would have been if he had gotten the laser treatment first. Now, his latest eye exam shows no further signs of the disease and he’s expected to have good, if not perfectly normal vision. Nathan also faced a number of other issues during his stay in the NICU, most of which he has now overcome. He suffered from a grade 1 brain bleed, had challenges with his liver, dealt with damage to his lungs from being on a ventilator for so long, he had feeding difficulties for a while. Basically, almost all of his major organ systems were affected by his prematurity. After 140 days in the NICU, Nathan finally came home and he is such a blessing and a joy to us. Not only has he survived, but he’s now progressing well, gaining weight and achieving his developmental milestones so far based on his adjusted age. He's now 9 months old (5 1/2 months adjusted) and it's hard to even tell that he is a preemie. Once given less than a 5% chance of survival, he’s now expected to have a normal, healthy life, so he’s truly a miracle baby in so many ways. I'm so happy that Nathan is doing so well, but even though I had a good outcome, I am still affected by the trauma of having gone through PPROM and a lengthy NICU stay. My advice to anyone going through this is do your research, don't give up hope, demand that everything be done for your baby regardless of what the doctors tell you and make sure you do whatever you can to have your baby delivered in the best hospital you have access to. I truly believe that having Nathan born in such a great hospital that has a lot of experience with preemie babies is what saved his life. I really feel for anyone going though this. It's such a horrible experience when pregnancy is supposed to be a joyous time. I am willing to speak with anyone who wants to know more about my experience or needs advice on how to get through this. Please write me at cwilson06@gsb.columbia.edu and I would be happy to help however I can.