Submitted by Jessica
Our son was two and we were ready to add on to our family. I became pregnant after our first try and we were very excited. I was a little nervous about my “advanced age” as I was 36 going on 37, but otherwise I felt good. We told our son about the baby, and asked him whether he thought it was a boy or a girl. He told us it was a lion. Later we learned our baby was another boy and our son’s prediction didn’t falter—our baby was a boy lion.
We’d passed all the chromosomal tests for my “advanced age” and appeared to be in the clear. Once the first trimester was over, we announced the news to our family. 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.
It was not. The ultrasound tech was a little quiet during the ultrasound. 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.
My unborn son had bilateral multicystic kidney syndrome. That meant neither kidney had formed correctly—they were just balls of cysts. As a result, he was not producing amniotic fluid. There was none. I waited for the doctor to tell us the solution. There was none.
One cystic kidney can be managed, but two is very rare (1 in 10,000) and is fatal. Because there were no kidneys, he could not form amniotic fluid and would not develop lungs. Our options were to terminate the pregnancy now, wait and see if the pregnancy terminated itself, or wait to see if the pregnancy went to term and he was stillborn or lived for only a short time on dialysis awaiting a kidney transfer that would almost certainly not be successful. That day my husband and I decided to terminate the pregnancy.
We had a 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. His kidneys looked like clusters of grapes. Also, the doctor did not see a bladder or a stomach and the deformed kidneys were so large that his heart was displaced. If the pregnancy went full term, this child would not live and 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 procedure that would end this pregnancy 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. They told me it was a freak occurrence and not my fault. Yet, I looked for every way to blame myself.
Finally, the day came. My doctor began the very painful process.That night I spoke to my unborn son. I doubled over on the floor in pain from the cramping. The next morning, we went to the hospital for the procedure.
When I awoke from anesthesia, my little lion was gone. I expected to feel better emotionally but a new form of grief had taken over. My body didn’t understand that he was gone. My body thought I’d had a baby and my milk came in. My body wanted to nourish a baby who was not there. It was a daily painful reminder that he was gone.
I am feeling better now. I don’t cry every day anymore. But this is not something I can simply get over. Small everyday tasks can leave me in unexpected tears. I will move forward. But I will never forget the son I never got to meet. My little lion.
Thank you, thank you, thank you. We are in the throes of agonizing over a similar decision. The anguish is unimaginable. Reading your story gives me strength. Sending you love and peace.