Every morning, when I wake up, I check Facebook to see what the world has been up to while I slept. At my stage of life, I’m always met with a fresh onslaught of pregnancy announcements and baby photos. Glowing women in all their glory, snuggly babies in baskets. I love these posts. But in recent weeks, I’m seeing a lot about Planned Parenthood.
I was hesitant to watch these videos at first. Afraid, given my circumstances, that I would be horrified, but I wasn’t. I’m nervous about what comes next for the organization. They have fought back from all kinds of attacks, but this one has even the pro-choice side worked up. All of this perfectly timed, of course, to an election cycle, and to a time when new abortion restrictions are popping up right and left, at state and federal levels. And now I truly know what women stand to lose.
To put this in context, I am an OB/GYN. I trained at a hospital where, because we received state funding in an extremely conservative state, we did not do abortions. I rarely met the women who needed them. But I have always considered myself pro-choice (as I think all women’s health professionals should be), and never had any problems with the pro-choice basics. I don’t think we can ever judge a woman’s reproductive decisions until we’re in her shoes.
My own pregnancy had been going without incident. We decided to start trying for a second child just before my son turned two, and I got pregnant the first month we were trying – a surprise, because I needed treatment for infertility with my first. I was pretty sick through about 16 weeks, but it was better than with my first. And I had gotten through the rough part; I was feeling better. Nurses and patients were getting brave and asking if I was pregnant. But I wasn’t hiding it. It was my second, and I was clearly showing.
At less than 12 weeks, we had the results of our early genetic screening. Negative testing for Down’s syndrome. Negative testing for some things called trisomy 13 and 18 – which come about the same way as Down’s syndrome but are fatal. Negative testing for something called Di George Syndrome, which, among other things, causes fetal heart defects, developmental delays, and facial abnormalities.
And we were having a girl.
Because I see all of the bad things that can happen, I think I am justifiably paranoid about pregnancy. But my genetic testing was normal. I had taken a few peeks with ultrasound and everything looked OK. I was at the Gap shopping for my son and saw a tiny little dress I couldn’t pass up. I bought some adorable blankets from Target. I started shopping online for the nursery. We started talking to my son about his little sister.
At the standard 19 weeks and a few days, we had our anatomy ultrasound with the high risk OB specialists. My husband knew the sonographer (he’s also an OB/GYN, did I mention that?). The whole time, we were joking about our baby girl’s modesty. She wouldn’t open her legs and give us a good look, but no matter; we already knew the sex anyway.
And then we got to the heart. The sonographer just couldn’t get the pictures he wanted. He was shaking my belly with the probe to get her to move. He had me turning side to side. He had me go empty my bladder.
The atmosphere in the room changed. It changed from, “I can’t see…” to, “I should be seeing…”. He was using words like overriding and stenosis – words that I know, but wasn’t really hearing. At some point, he reached out, touched my hand, and said, “It’s nothing you did,” and it wasn’t until that moment that I knew something was really wrong. I think he assumed that because I’m an OB, I knew exactly what I should be seeing. But I don’t do these complex heart views, and to be honest, I’m not sure I would have caught it on my own.
The high-risk doctor came in. We know him personally as well. He and the sonographer kept scanning and talking about what they saw. We were still too early, the heart was too small, they couldn’t say exactly what the problem was. We left knowing that there was “something going on with the heart,” but little more.
We were offered an amniocentesis while we were there, but I was scared. I didn’t think the results would be helpful. I had already had a negative screening test. The 20 week, 6 day deadline for termination of pregnancy in our state was mentioned, but I didn’t give it a lot of thought. The amnio results might not even be back at that point. There was a heart defect, and that was scary, but we would deal with it.
After agonizing over it for a day or so, we decided to do the amnio, mostly because we thought we would be reassured by normal results. The same doctor who did our original ultrasound did our amnio. It was uncomfortable, but not terrible. He and the sonographer looked at the heart again, talked more, and felt more confident that our baby had something called Tetralogy of Fallot. This is something that all medical students learn about. It has to be surgically repaired in infancy, but it is often manageable. I have a friend who had a baby girl with it, and she did great. Shaun White, the snowboarder, has it. Our lives would be different from what we had imagined, but we felt reassured. We thought we could handle it.
Afterwards, we had a fetal echo, an even more detailed look at the heart, and met with a pediatric cardiologist. The echo tech was in good spirits; we chatted the whole time, laughed about kids and family. Then he put us in a room to wait for the cardiologist.
The cardiologist asked us what we already knew, and we told him we thought it was Tetralogy. We were ready to talk about surgery and recovery. We already knew that despite an initial surgery, long term prognosis is very good.
He pulled out some pictures, and told us it was something else. Tetralogy of Fallot with absent pulmonary valve. Those four words changed everything. Neither of us had ever heard of it before.
Our little girl’s pulmonary arteries – the vessels that take blood from her heart to her lungs – were enlarged. They were likely already putting pressure on her airways and keeping them from developing normally. They would continue to grow throughout pregnancy – there was nothing to do to prevent it. She might develop heart failure before she was born. If not, her heart would have to be surgically repaired, probably in the first week of life, but that wasn’t the main issue. Because of her poorly formed airways, there was a good chance she wouldn’t be able to breathe when she was born, that she wouldn’t even be able to be mechanically ventilated. That she would die in the first few minutes, the first few days. I pushed the cardiologist for numbers. I wanted to know the chance that she would even survive to have surgery – he told me it was 50/50.
If she made it to surgery, which itself has about a ten percent mortality, she might need a tracheostomy. She might be ventilator dependent, even for years. She would probably need a feeding tube surgically implanted in her stomach. She would definitely need at least two more open heart surgeries during childhood and adolescence. He used the phrase “if you choose to continue the pregnancy” more than once. He again mentioned the 20 week 6 day deadline. We were 19 weeks 5 days.
He told us to take our time in the room and quietly stepped out. We fled. I saw my husband cry for only the second time in our marriage. It was late Friday afternoon.
We spent the weekend in shock. We read everything we could find about the diagnosis, and there wasn’t much. It accounts for 3% of patients with Tetralogy of Fallot. The prognosis is poor.
We talked over the weekend about termination. We went back and forth. We knew the prognosis was bad, but no one could tell us how bad. A lot of these babies die, but some of them live. A lot of them are ventilator dependent, need feeding tubes, have developmental delays, but not all of them. If this had been something we knew she couldn’t survive, I think the decision would have been easier. I found myself listing all of the bad birth defects I know of, bargaining for a better one, or a worse. I cried for two days straight.
We were able to get scheduled for a second opinion with a different pediatric cardiologist on Monday, when we were 20 weeks 1 day. If we were considering termination, I had to be absolutely sure of the diagnosis.
We talked to the second cardiologist and the chief of pediatric cardiothoracic surgery at a different major academic hospital. They confirmed the diagnosis. The doctors were so patient. We talked about tracheostomy, ventilators, and ECMO. Surgery and recovery, pain medications and sedation. Feeding tubes. Developmental delays. Home nursing care. None of this was guaranteed, but all of it was a very strong possibility.
What was certain is that if our little girl lived past her first few breaths, the medical care she would need sounded like torture. I wouldn’t be able to hold her and comfort her. I found a support group for the condition online; people only post the success stories to those kind of groups. But even the success stories involved kids with tracheostomies and months or years on a ventilator, feeding through a tube, children who didn’t leave the hospital for the first time until they were a year old – or 2, or 3. Sometimes never.
I couldn’t imagine subjecting a baby to that. I couldn’t imagine telling my toddler she had to have another open heart surgery that she might not survive … and then telling her again when she was a teenager, and old enough to understand what that means.
And we have a 2-year-old son who still expects to have parents.
Every time I leaned toward termination, I felt I was being selfish. That I was choosing our lives – mine, my husband’s, my son’s – over hers. Every time I thought about continuing the pregnancy, I felt I was being selfish. That I couldn’t go through with termination because I couldn’t cope with the guilt. That she would suffer because I was afraid of my own emotional pain. I knew that if I terminated the pregnancy, I would never be able to see or hold our daughter – in our state, only a procedure called D&E is offered, I couldn’t be induced. I couldn’t bear the thought of it. I had been able to feel her moving through all of this.
I wanted someone to tell me that it was OK to choose to spare our baby from all the pain that was in store for her. I knew my family felt like that was the right decision, but no one would say it out loud. We didn’t feel like we could tell my husband’s family what was happening because they’re very religious, very conservative. I pored through the posts of support groups, but they don’t seem to include women who terminated their pregnancies. I was desperate for someone to tell me the answer, but we had to make the decision ourselves.
We ultimately decided we couldn’t bring a baby into the world to suffer in the way that we knew our daughter would. When we get pregnant, we imagine lives for our children – lives that will inevitably include some amount of pain, of suffering, because that is just how life is. But knowingly bringing my daughter into the world for this life felt inhumane.
We had connections. We were able to start the termination process the next day – technically meeting the 24 hour waiting period mandated by law in our state. I got my mandatory counseling, which, among other things, told me that I had access to prenatal care, that the baby’s father was required to provide financial support – so irrelevant, and so insensitive in our case.
We had the cervical dilators placed, and I cried through the whole thing. The doctor cried. It was excruciating and emotionally traumatic. The surgery was scheduled for 48 hours later. The cramping was terrible, and I spent the rest of that day and the next in bed.
And then my water broke. My son was home with us. I’m an obstetrician, but I panicked. I wasn’t ready for it, even though I knew it was something that could happen. The surgery wasn’t supposed to be until the next morning; I was supposed to get to keep my baby for one more night.
But we couldn’t wait. We had to go to the hospital right then. I was afraid the whole drive that I was going to deliver her in the car. Part of me hoped that I would; at least I would get to see my baby.
We had the procedure done that night, and then went home. There were no complications. It was over before I had much time to think about it. The next day, I almost felt relieved. Physically, I wasn’t hurting at all anymore. I wasn’t agonizing over the decision. It was done.
That feeling didn’t last long.
One of the hardest things about this decision is not being able to talk about it. There is a culture of shame that surrounds abortions. There are a few people who know what happened, but even as an OB/GYN who is openly pro-choice, I worry about being judged.
We’re telling people we lost the baby, which is true, but not. There is little support out there for women who have late terminations. As I had already learned, you don’t find it in the support groups for these fetal conditions; instead, you read a lot of statements like “termination was NEVER an option,” and “we always knew our baby would be OK.”
And somehow you feel like you don’t have the same right to grieve as a woman who went into preterm labor, whose baby died. But I was devastated. My milk came in; I bled for two weeks. None of my clothes fit. I had all the normal postpartum mood changes, but without a baby.
I went back to work five days later, which now seems so crazy, but I didn’t know what else to do. I took my first call in the hospital, delivered my first baby eight days after I lost my own.
On my first day back in the hospital, I had to tell a large group of labor and delivery nurses that I wasn’t pregnant anymore. One asked if I had had a miscarriage, and I froze. I didn’t know what to say. I told them she had died, because I just couldn’t bear the thought of them judging me.
I’m terrified of getting pregnant again, of constantly wondering if my baby is OK. Of not knowing until halfway through. I was so excited to be having a girl; I’m worried that if the next one is a boy, I won’t be happy. I’m worried that this will happen again. We got the amnio results back a few days after the termination, and they were normal.
This was just bad luck.
We always tell patients that they didn’t do anything wrong, and we mean it, but I wonder … I had a couple of glasses of wine, I took a bath that was probably too hot, I took nausea medication.
About a month after we chose to end our pregnancy, the US House of Representatives passed a bill banning abortions after 20 weeks, with exceptions only for victims of rape.
To be clear, two doctors – both OB/GYNs, with connections to help us get squeezed in for last-minute appointments, and better access to care than just about anyone else – were barely able to make a 20 week 6 day deadline at our own hospital. It would have been literally impossible, even for us, to have made a 20 week cut-off in this case. What a 20 week abortion ban is doing, in essence, is taking away the option of ending a pregnancy for fetal anomalies, even those that are lethal, discovered at an anatomy ultrasound.
My worry is that, if public opinion and conservative politics win out, and we push the gestational age limit on abortions earlier, we, as physicians, will have to start doing our ultrasounds earlier. We know as obstetricians that for detailed structures like the heart, even with the best of today’s high-resolution imaging technology, there is a limit to how early you can see anomalies. Women will have to make decisions with less information, with less reliable information. They’ll feel even more rushed. At my first ultrasound, just before 20 weeks – which was performed at a major academic center with a very well-reputed high-risk OB department – we couldn’t be sure of the diagnosis. Even with the very best of care and connections to get appointments without a wait, I was still pregnant well into my 20th week.
I get it. Most people consider a 20 week abortion ban to be reasonable. All they know of late-term abortions are the gruesome – and usually inaccurate – descriptions of the procedure given by pro-life activists. They’re horrified by pro-life propaganda that has been spreading recently.There are already several states that have 20 week restrictions on the books. And banning abortion after 20 weeks has never seemed very restrictive, even to me. I could never imagine a woman choosing to end a life that she could feel moving inside her.
Abortions past 20 weeks account for a little more than 1% of the total abortions performed in the US every year. Most of these women are in crisis situations and almost certainly would have preferred to have been able to terminate their pregnancies earlier.
Maybe they didn’t find out they were pregnant until late in pregnancy (because their periods are irregular or their birth control failed). They can’t get access to healthcare for months because of long waits or lack of providers nearby, or they don’t have the money to pay for an abortion early on. They get halfway through pregnancy and find themselves in a marital or financial crisis. They are diagnosed with cancer that needs treatment, or they develop heart failure because of the excess strain a pregnancy puts on the cardiovascular system. They find out there is something terribly wrong with their growing baby.
Women seeking late-term abortions often don’t have options. It isn’t really “elective.” I truly believe that it is a decision no woman could take lightly. Ever. We need to start giving women more credit. Politicians act like these decisions are hasty, irrational, or uninformed. Look a woman in the eye who has been here, and see if you still think that. Placing more burdens on women – arbitrary gestational age limits, 72-hour waiting periods, mandatory counseling and ultrasounds – just adds more pain to what is almost always an excruciating decision.
These videos that have come out, of course, are going to make this decision harder on women. Are going to make women who have already made this choice feel exploited. I sympathize with the doctors in the videos and the women who are going to think twice about donating fetal tissue. If I could have donated my daughter’s heart for research, or any of her tissue, I would have, but I wasn’t offered this. I didn’t have my procedure at a Planned Parenthood.
Abortion rights are something that few people want to talk about, especially the women who have needed abortions and who are most in need of supporters. I’ve shared my story a bit since my procedure, and women come out of the woodworks, happy to share an experience with someone they know will understand. There is a culture of shame that prevents women from coming forward. Who is going to defend us if we feel afraid to speak out ourselves? My initial reluctance to tell the truth has been replaced by a desire to scream it. I feel a responsibility to help women that find themselves in my situation.
Maybe this will eventually make me a better doctor – more sympathetic, more understanding of loss, better able to provide women with the support that they need. I truly do hope that something good might come of it, if for no other reason than to give some meaning to my pain.
It is easy to think that you support a 20 week abortion ban when you’ve never had to make that decision. When you don’t think you know anybody who has. At this point, the only thing I know for certain is this: you can think in the abstract about the difficult decisions people are forced to make, and you can theorize about what you might do, what you believe, what is truly important to you. But until you have actually stood in those shoes and made those impossible choices, you cannot pass judgement on someone who has.
These choices belong with women, their families, and their doctors. Politics and public opinion have no role.