Our Story

We learned we were pregnant in September 2009. This baby was much anticipated and hoped for, however previous pregnancy losses left us cautiously optimistic. The pregnancy had a relatively smooth start. The only abnormal findings were a vanishing twin and an elevated NT measurement at 11 weeks. Follow up blood work gave us an increased risk of Downs Syndrome but we decided against amniocentesis. The results would not change the course of the pregnancy and neither of us were willing to risk another miscarriage.

At 15 weeks I awoke thinking that I was leaking amniotic fluid. We went to the hospital in a panic but all the testing back normal. To further ease my mind they did a bedside ultrasound and the baby had normal fluid levels. We left feeling confident.

Around 18 and a half weeks I began to worry that my stomach was growing smaller. It is hard for me to know when I am being paranoid or when I should actually be concerned. At a routine prenatal visit I mentioned my concerns to the doctor (not my normal OB) and he assured me it was normal for the stomach size to fluctuate. Even when my fundal height was lower than expected he continued to say all was well. My anatomical u/s was in 2 weeks and he recommended waiting until then. I was uneasy with this and talked to my regular OB the next day. She arranged for me to get an u/s that afternoon.

This is where our hopes for a healthy pregnancy fell apart. I had a very long u/s with a stone faced tech. I only glanced at the screen two times. I am not an expert but I knew there was not nearly enough fluid surrounding the baby. She finally left me to go over the results with the radiologist. The doctor came in carrying tissues-never a reassuring sign. She explained that the fluid was extremely low but at this point they do not know why. I was sent to my OB to go over the u/s results.

Stephen met me and we went in to meet my OB. I was checked again for leaking amniotic fluid but the testing was normal. She was at a loss for a diagnosis and suggested it could be poor kidney function (amniotic fluid is actually baby urine). We were ushered over to meet with the perinatologist. He was able to establish that the baby does have kidneys and that there was fluid in both the bladder and the stomach. He felt that it was probably a placental insufficiency and the baby was shunting blood away from less critical organs (ie kidneys) to keep the brain, heart and adrenal glands healthy. He was clear that this pregnancy was nonviable and offered us the option of terminating. I knew in my heart that was not something I am capable of doing. We were not given any options to help diagnosis the problem. He said that regardless of the issue there was nothing we could do to fix it so further testing was pointless.

We went home broken hearted with no advice on how to proceed. The doctors said bed rest and increased fluid would do nothing to help. Despite that we tried anyway. I spent the next week on my left side and drinking as much water as I could tolerate.

We also decided to get a second opinion. I thought the perinatology group at Strong Memorial may have a different point of view. One week after the original u/s we met with a perinatologist at Strong. She was blunt and told us that the fluid levels had dropped even lower this week and were no longer high enough to support lung development (babies inhale amniotic fluid for practice breathing-this is crucial for lung development). Without fluid our baby could still continue to grow normally but once born would not have viable lungs and would die. Testing on the placenta looked normal and the kidneys were clearly filling the bladder. She offered us the option of amnioinfusion to make a definitive diagnosis. They inserted a needle just as during an amniocentesis but rather than withdrawing fluid they fill the uterus with blue fluid. If there was a leak in the amniotic sac the blue dye would make it very obvious. During the amnioinfusion they also withdrew a small amount of fluid for chromosome testing as the u/s showed several soft markers that could indicate genetic problems. This is how we learned we are expecting another daughter (with normal chromosomes!).

The amnioinfusion did its job-I was clearly leaking fluid and had suffered from preterm premature rupture of membranes (pPROM).

I assumed this was the end of the road and we would simply continue the pregnancy until labor or infection forced us to act.

Still looking for some promise of hope I spent hours researching online. I found many research articles that were very gloom and doom. However I also found a story of a woman much like me and her baby boy survived. This lead me to the pPROM website http://www.kanalen.org/prom/ and more stories of successful outcomes with pPROM and low amniotic fluid.

Armed with this knowledge I went into our next u/s with a little sliver of optimism. Again there was very little fluid, but our daughter was still growing on track and her heart beat was strong. The doctor agreed that survival was not impossible and she was willing to follow our pregnancy if we wished to continue. The obstacles ahead were made very clear. I am at risk for developing an infection at any time. If I do they will have no choice but to deliver regardless of how far we are in the pregnancy. I am also at risk of going into labor at any time. If I do they will not stop contractions as they can be a sign of infection and the risk to me is too great. Beyond those risks, there is no way to know if our little girl is getting enough fluid to develop her lungs. We will not know until she is actually delivered. Ultimately we can make to all the way to 35 weeks only to discover her lungs are not compatible with life. That uncertainty is the hardest thing to accept and live with.

We decided to start this blog so that we have an easy way to get updates to loved ones and also for other women experiencing pPROM and looking for help. I have benefited from other women sharing their stories and would like to return the favor.