I have two grown children from a previous marriage that my husband has helped me raise, but he does not have any biological children.
Financially, we have had some very rough times, but in 2015, we were finally in a financial and emotional position to see if we could have a child together.
Financially, we have had some very rough times, but in 2015, we were finally in a financial and emotional position to see if we could have a child together. My tubes have been blocked since I was 22, so due to my age (41 at the time), the only way for us to achieve this was through IVF (in vitro fertilization).
After three rounds of IVF with only one embryo to make it to day five, we were pregnant with what we thought was our miracle.
After three rounds of IVF with only one embryo to make it to day five, we were pregnant with what we thought was our miracle. We were so excited and happy! We did the non-invasive Cell-Free DNA screening at nine weeks, to rule out chromosomal issues, and more importantly, to find out the sex. Since I already had two very “normal” and healthy kids, the chromosomal issue was not really at the forefront of my mind. Most families do not opt for the early testing as it can be costly, and most don’t have any idea anything is wrong until after the 20 week scan. But for us, at 12 weeks and 4 days, our world shattered when we were told the results showed possible Trisomy 13, and our baby was a boy.
A visit to a Maternal Fetal Medicine (MFM) Specialist confirmed full Trisomy 13 diagnosis via CVS (chorionic villus sampling) a few days later. We wanted to be absolutely sure, so we waited until 16 weeks to try to do amniocentesis.
Since that first terrible phone call, and during the weeks of waiting for results and more tests, I was completely terrified I would feel him move or kick. I was afraid to bond with my baby. I withdrew into myself, I hid my growing belly. I did not want people who didn’t know asking how my baby was doing. My husband worried about my mental state, as I had done nothing but cry and research Trisomy 13 for weeks. My job suffered, my relationships with friends and my living children suffered, and my husband grieved in private, trying to stay strong for my sake.
At the 16 week appointment, they were unable to do it amniocentesis as the placenta had not properly fused (a further indication of a major problem). During a detailed ultrasound that day, we were able to confirm and visibly see that our son had no stomach, no esophagus, kidney issues, umbilical cord issues, and his heart was incomplete, missing two chambers and misplaced valves. Without a stomach, he could not swallow and digest amniotic fluid, which would mean my life would be in greater danger each day I continued to carry him, due to my body retaining the excess amniotic fluid. Because of all of these known issues, the doctor also did not feel he would ever develop lungs.
At 16 weeks and 5 days, we let our baby go and had an abortion. We agreed we could not let it continue and allow him to suffer.
Not everyone is so “lucky.” And our reproductive decisions and health should not be dictated by luck.
We were “lucky”, as our son had a genetic condition that could be detected and 100% diagnosed prior to 20 weeks (when most laws want to ban abortions), we had excellent non-federal insurance, had our procedure in a big hospital with the Director of the MFM practice, and we had early enough testing that we were able to do research and make decisions before the pregnancy progressed far enough to be dangerous for me.
I fear for my now-21 year old daughter, and for what her reproductive health care will look like in the coming years. I just hope she will have the same choices and opportunities as I had.
Not everyone is so “lucky.” And our reproductive decisions and health should not be dictated by luck. I fear for my now-21 year old daughter, and for what her reproductive health care will look like in the coming years. I just hope she will have the same choices and opportunities as I had.
