Some Things They Couldn't Find

Diagnosis: Potter's Syndrome

By April

It all started in December, 2004. I'm a mother of two, working full time and coming home nightly to be with my babies and my husband. Life was so full at the time. We never thought of adding to our family, but toward the end of December after the holidays, I had this feeling that I might be pregnant. I work in a doctor's office so the next morning at work I grabbed two pregnancy tests. I couldn't wait to get home. After I got home, I waited on my husband to get in from work. We ate dinner and that's when I told him that I thought we might be pregnant again. So we took the first test and it showed positive. I immediately started prenatal vitamins, check ups, all that. I did everything right and everything was going well.

At my first ultrasound, I was so excited. It was the first time I saw my baby. That day came and everything went well. At about 20 weeks, my doctor ordered my second ultrasound, which I was really looking forward to, because then I could start buying all the stuff. Blue or pink, bows or hats —you know, all the fun stuff about being pregnant and buying for the new baby. It was a long two weeks before my appointment, but the day finally came. The day that has forever changed my life.

The technician came in, very upbeat. After getting some pictures of the baby she said that she was going to talk to the doctor because there were some things she just couldn't find, but not to worry. Not to worry? That's all we did for the next 15 minutes we silently sat there, anxiously waiting to see what they were going to tell us. They came in and the doctor told us that they didn't find any kidneys or bladder, that our baby didn't have any amniotic fluid supporting it. My heart felt empty. We were to go the next morning to a specialist for a third ultrasound. I didn't sleep the whole night, thinking about what the doctor had told us. We got to our appointment and they confirmed the same exact thing. Our baby never developed kidneys or a bladder. With no kidneys there is no amniotic fluid. They told us that our baby would not survive.

We were given the option to terminate the pregnancy or to go full term, but either way we would never bring our baby home. I went home that night and cried and cried. I wasn't sure what to do. I wanted to carry my baby full term so I could feel every last movement, hear every last heartbeat, but I also thought: no amniotic fluid, how was my baby going to move freely? All my baby could do is move her hands and feet. If I carried her to term, she would be even more deformed because she couldn't move freely. We never even knew if she would make it to term in that situation.

My husband and I did some research on the internet and at the library. We found out that our baby had bilateral renal agenesis (meaning no kidneys) and that causes Potter's syndrome (no amniotic fluid). There is not enough information on it as to why it happens, but I read that it occurs in 1/4000 pregnancies. After studying all information we found on the internet, we decided to induce labor. On April 1— I was exactly 21 weeks we went in to be induced.

Editor's Note: from Potter Sequence, Phillipe Jeanty MD, Ph D and Sandra R. Silva, MD: "OCCURRENCE RATE: The incidence of Potter's Syndrome is said to be somewhere between 1 in 2000 and 1 and 5000. The average would suggest to be on occurrence rate of approximately 1 in 4000 births."


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