The journey that led me to make a very personal film, 20 Weeks, started in 2014, in the middle of my mid-pregnancy sonogram, when our doctor very unexpectedly stepped out of the room, saying she needed to check on something.
My husband and I honestly didn’t think much of it. We had done this before, as this was our second child. We just wanted to smile at the cute pictures of our in-utero daughter and get back to our busy days.
But then the doctor shuffled back into the room, shaking a bit, clearly nervous. She blurted out very suddenly that my husband and I might need to make some tough decisions around our pregnancy, because our baby’s mandible bone wasn’t measuring correctly. My initial response was confusion, and a bit of, “So what?” A small mandible bone sounded like a non-issue to me.
More doctors came into the room, and zoomed in and out of the sonogram images, looking, measuring and making notes. The doctor went on, still shaking, still nervous, to say that this measurement was an indicator of several potentially serious health conditions caused by a genetic anomaly, and that further testing would be needed to understand just how serious it might be.
We stepped into another room, where another doctor came in and reviewed the results. Both doctors agreed that her mandible bone was measuring under what it should be, and that we would immediately need to do a microarray test. They had already ruled out Down’s, but wanted to check for thousands of other issues, like Trisomy 18 and 21, that would help us make a decision.
Our doctors were kind, but clear, in stating the potential outcomes. They said that even if the microarray was clean, there were no guarantees that our baby would be healthy, since there were a number of undetectable issues that could happen.
They also mentioned that given the measurements of our daughter’s jaw, our baby would likely need surgery after birth, because she would have serious breathing and eating issues.
The doctors and the genetics counselor also mentioned that they would rush our results, since we were at week twenty-one, and in the state of California, abortion is only allowed through week twenty-four. Beyond that, we would have to go to New Mexico or Arizona if we wanted to make that decision.
They gave us their personal information and told us we could call or email any time. I left the doctor’s office sobbing. My husband was quiet, holding it together for the both of us.
The next couple of weeks were harrowing. I googled relentlessly, reading about every health issue I could associated with micrognathia, which was the official diagnosis for “a small mandible bone.”
My husband went the opposite route. He didn’t google, he didn’t look, and when I brought things up, he didn’t want to talk about them. He was quietly suffering inside and didn’t know what to say. We discussed what it might be like to have a child with a serious health issue, and it was daunting to both of us.
I felt myself falling into a black hole. I wish I could have articulated what we were going through to a friend or a family member. But I couldn’t. I just couldn’t find the words. Instead I spent many lost, lonely hours reading and falling into a helpless sort of despair.
I took long walks around the track near my house, in the sweltering July heat, feeling the baby kicking.
Then doctors called us two weeks later, saying that the microarray was clean, which meant we were in the clear. But they were cautious, letting us know that issues like Pierre Robin sequence, which our daughter was ultimately born with, weren’t detectable, and that we would need to come in for ultrasounds every two weeks to make sure all of our baby’s measurements were “growing on a normal curve.” They also wanted to have a team of doctors at her birth, in case she couldn’t breath and would need a tube in the neck.
So, every couple of weeks for the rest of my pregnancy, I went in to see our Fetal Medicine doctors. They zoomed in and out of my daughter’s images, meticulously measuring every detail, from her hands and finger to her jaw.
Each time, they could see that everything was growing on a “normal curve.” Through this, I was amazed by the depth and breadth of expertise that was available. From the brilliant geneticist who had seen many babies born with issues like our daughter had, to the neonatologist who would be there when my daughter was born.
There was so much technical knowledge, this imagery that they could create—3D, 2D, video images of my daughter—I would spend some evenings just looking through these mysterious sonogram images of my daughter. Who would she be? What would her situation be like when she was born?
From all the images, I started to ponder an art piece—something that would capture all of these feelings I had. It was then that a movie started emerging. At first, this was going to be a movie that I didn’t share because honestly, I felt responsible for all that was happening and didn’t want anyone to know about it.
After my daughter was born with a cleft palette and small jaw, in a room with at least ten doctors, there was a haze of surgeries, doctor visits, feeding challenges, therapies and worrying. The non-stop worrying went on and on.
Through it all, that pesky movie that I didn’t want to share with anyone kept returning. I wrote it in bits and pieces, and I couldn’t stop. And after my daughter was born, we could no longer not tell our friends and family what we had been through. My mom was devastated that we didn’t tell her in advance, and a couple of friends mentioned wishing that they had known.
But a funny thing happened as we started sharing our story: other women started sharing their own stories with me—heartbreaking stories where things had not ended well, where they had to abort, or where their child, too, was diagnosed with a health issue.
Around that time, I finished the script. I shared it with producer Jane Kelly Kosek, and we both agreed that we would want to make the film in a way that we wouldn’t have to compromise the vision for anyone.
My goal was to explore the issues in a multidimensional, humanistic way, showing just how devastating this situation can be for families—and especially for women, who often are given the “facts” but not the emotional and mental health support that they need.
As we made the movie, more women came to tell me in quiet, in secret, about their stories of loss and heartbreak. And then the movie was born, and as we’ve traveled and toured the country with it, every step along the way, we’ve met more people who want to talk about this gray area—this moment when a person or a couple is faced with a challenging decision and has to go forward.
And steadily, as the Republicans in power close in on women’s rights and, in particular, women’s health issues, I think back to my own story, and how lucky I was to have access to the amazing doctors who helped us through these tough times.
I think “late-term abortion” is just a term that politicians throw around because it sounds interesting, but I really doubt many of them have a taken a walk in the shoes of a family who has had to face these difficult choices. If they had, they’d feel very differently.
Also, medical science has come so far. Our doctors really were able to predict exactly what the issues were with our daughter and help us through it.
But what I really wish is that I would have had support, and a safe place to talk about what we were going through while we were going through it. There was so much fear and shame as it happened that some support would have helped us really get through it.
Women’s health issues like birth and abortion have been relegated to the realm of being “political,” sadly. What we need is a safe space for women to go, to discuss these issues, and really get the help they need when something does go wrong. For this reason, we were inspired to make 20 Weeks into a feature film. We hope that it can be a starting point for many more important conversations.
Lena Pendharkar’s 20 Weeks opens in 10 cities—as well as digitally—on April 13th. For more information on the film, check out its website.