Story No. 8: Patient from California

We were living in California. Our son was two, and we were ready to add to our family. I became pregnant after our first try, we were very excited.

We passed all the chromosomal tests for my “advanced maternal age” (36 going on 37) and appeared to be in the clear. Once the first trimester was over, we announced the news to our family — we were having another boy! I’d had some spotting, but everything looked good on the ultrasound. To be safe, the doctor told us to get another ultrasound at 16 weeks. The spotting had stopped by then, and I expected another good ultrasound.

The ultrasound tech was a little quiet during the exam. The doctor came in, but that’s common. I still expected the all-clear. Instead she said, “I have serious concerns for this pregnancy.” I started to cry, not quite understanding what I was hearing.

The diagnosis was bilateral multicystic dysplastic kidneys. That meant neither kidney had formed correctly — they were just balls of cysts. As a result, my unborn son was not producing amniotic fluid. There was none. I waited for the doctor to tell us the solution. There wasn’t one. One cystic kidney can be managed, but two is very rare (1 in 10,000) and fatal. Because there were no kidneys, he could not form amniotic fluid and would not develop lungs.

Our options were to end the pregnancy then, wait to see if the pregnancy ended itself, or wait to see if the pregnancy went to term. If we waited to term, he could be stillborn or live for only a short time on dialysis awaiting a kidney transplant that would almost certainly not be successful.

That day, my husband and I decided to end the pregnancy.

We had a voluntary follow-up ultrasound to be sure we were making the right choice for us and to see what they were talking about. I am glad we did that. I’m also glad we were given this choice. His kidneys looked like clusters of grapes. Also, the doctor did not see a bladder or stomach, and the deformed kidneys were so large that his heart was displaced.

 

If the pregnancy went full-term, our son would not live, and if he somehow did, it would be a short life in pain. I could not do that to my son. This was our first and last parenting decision for this child.

 

Waiting over a week for the next available hospital slot for my abortion procedure was the most emotionally draining experience of my life. I continued to be and feel pregnant. When my baby kicked I would feel happy, then I’d remember that I would never meet him. At 18 weeks, we terminated the pregnancy and said goodbye to our son.