This post was originally published on Trustmothers.
I am 18 weeks pregnant with our little girl. I have known since Christmas Day that we were pregnant with our third child. I have always known I wanted at least three children. My childhood best friend came from a family of four and I always wanted to be at her house. I thrive in chaos—the more I have going on, the better.
So for the last four months while extremely nauseous and tired, I have been so happy. As soon as my husband, Gary, and I found out she was a girl we knew her name would be Dorothy, after my grandmother.
On Wednesday, we went in for our anatomy scan. Ultrasounds are not my favorite thing. I tend to be a bit of a hippy about these things and I always wish for less testing, less poking, less prodding. But I am 38 years old and have had two miscarriages, one that was in my second trimester, so I have gotten used to these things. For the most part, I have a lot of gratitude that I have access to fantastic pre-natal care.
On the screen, we saw Dorothy moving around. The ultrasound tech commented a few times on her size—she was measuring more like 19.5 weeks. (I have big babies so I wasn’t surprised.) We heard her heartbeat, which immediately put me at ease. Her legs looked long and so did her arms. She had two arms, two hands, two feet, a perfect looking head, and all the parts they look for. I always like to see the spine, so beautiful and long.
The scan was moving along fairly quickly. And then we came to Dorothy’s heart.
The tech stopped talking and looked at her screen more closely. She changed cameras and tried applying a little more pressure to get Dorothy to move. She spent about 20 minutes looking at her little heart. It was clear something was not quite right. I asked Gary to pass me my phone and I texted him—even though he was right next to me—“something is wrong.” He agreed.
Shortly after, the doctor came in the room. He told us in the kindest way possible that our baby’s heart was not growing. We have a right side to our heart and a left side, he explained, and Dorothy’s left side had not grown.
Very soon after, we were in a taxi to Mt. Sinai’s pediatric cardiology department. Somehow those 70 blocks in midday traffic went by so fast. We needed a fetal echocardiogram (which is essentially a more extensive ultrasound with a pediatric cardiologist).
I lay on the table. The ultrasound tech looked closely at our baby’s heart. About 45 minutes later, the cardiologist came in and continued the ultrasound. She was looking so closely, calculating so many measurements, over and over again. I cried as quietly as I could, praying and hoping for our baby.
I recalled reading a story somewhere not that long ago, where a baby had an operation on her heart while still in her mother’s belly. I thought of friends I know whose children have had successful heart surgeries. I thought of how we live in New York City and have access to the best care.
After the ultrasound, I got dressed and we went into the doctor’s office. As soon as we sat down, she said, “Your baby has a severe and extremely rare heart condition.” She drew us pictures of the heart and explained how a fetal heart differs from an adult one. She explained the right side’s job and the left side’s job.
She explained what would happen if I carried Dorothy to term. She would be born. She could have no colostrum, no breast milk, no formula. Nothing for four days. We would essentially starve her while she was closely monitored. And then on day four of life, she would undergo a very risky surgery that wouldn’t entirely fix the problem but would help Dorothy live. If she survived that, she would have another surgery three months late—and it goes on and on like this for years. A life of suffering from day one.
As my mind raced in shock, I couldn’t get over the idea of not feeding my baby. I interrupted and said, “Not even through a tube?” The doctor replied “No, no food at all.” I thought back to my sons, Louis and Arthur, first few days of life and how they literally nursed around the clock.
Then I thought how I would be pretty much living at the hospital and how much I would miss them and how much they would miss me. I saw them having breakfast without me, going to school without me, and going to bed without me. I thought of how Gary and I would trade shifts at home and at the hospital and how we would hardly ever be together.
And in that moment my heart broke. That heavy feeling where all of the sudden your chest aches so much, it feels like it carries the entire weight of your body. I couldn’t really swallow because somehow my heart also resided in my throat. I forgot how to breathe. And the doctor was still talking.
Now, we are waiting to terminate our pregnancy. We feel like we are in purgatory. Time has never moved more slowly. I am used to wishing there were more hours in the day, and now I can’t believe how long the days can be. Some people refer to this as an “elective” surgery. But something about this feels far from elective. We want this baby as much as we wanted Louis, as much as we wanted Arthur, as much as we wanted the babies we lost when we miscarried.
Coincidentally, I read an article in The Washington Post about a law passed in Indiana that will not allow mothers like me to make this choice. What kind of world are we living in where we do not trust mothers to make the best choices for her family, her baby, and herself?
Our hearts are broken. We are living in a nightmare. I have not slept.
The idea that a woman in my country suffering the way I am suffering would not have a support network and access to care close to her is unacceptable. No one wants to make these choices. No one. This is not a negligent, unloving, or flippant choice. This is one of the most heart-rending moments of our lives.
I have had a second trimester miscarriage. I know how awful I will feel physically (not to mention emotionally, spiritually, and psychologically) for weeks. My body will be in a postpartum state with no baby in my arms. My milk may come in. And I will walk around empty, still looking visibly pregnant to the world.
I have always been pro-choice. I was raised in a pro-choice family. But I have thought much more about this law as it pertains to women collectively than to me. We must change the story of abortion. Abortion is not just people ending their unwanted pregnancies.
And this is why I am sharing such a personal private moment in my life. Because the personal is deeply political today.
