An open letter to all doctors who provide care to women with cervical insufficiency.
Here in the US, there is a lot of heated discussion about abortion. That’s not what I want to talk about, though, because while we as a country focus on that, there is another, quieter epidemic: extreme prematurity caused by cervical insufficiency (CI). Every day, women are losing babies that they love and want due to CI. It’s supposed to affect about 1% of pregnancies. In the US in 2012, there were almost 4,000,000 births, which means that at least 40,000 that year were affected by CI. Not all of the babies born too early will die, but most will, as women with CI tend to deliver their babies before medical viability (24 weeks). That’s a lot of babies lost, but that’s not even the whole story. CI is vastly under-diagnosed, and many second-trimester deliveries attributed to other things (infection and preterm labor, for example) are actually caused by a weak cervix. I get it; CI is notoriously difficult to diagnose. It’s impossible to screen for it, and you can’t be certain that the weak cervix was to blame unless you catch it in the act, or a woman has had multiple second-trimester deliveries (sadly, many women do). Still, as soon as you dive into the CI community, it becomes apparent that the incidence of CI-caused second trimester deliveries is under-reported. Who really knows how many babies are lost to cervical insufficiency every year? Too many, certainly.
I have congenital CI. I didn’t know – couldn’t have known – until it was too late, and I was delivering my first child, my daughter Lucy, at 23 weeks exactly. Too early! It was too early for my little one to be born. She was beautiful, and healthy, and despite not being “viable,” she defied the odds and lived. She lived and lived, struggled and grew, and constantly amazed her adoring mama and daddy. Unfortunately, almost two months later, an infection took her from us, and our world crashed down around us.
You told us what we would do next time. You said we would try it, and “if it doesn’t work, you can always try again.” Those words haunted me. Try again? If it doesn’t work? I’m still trying to figure out how I’m going to go on living after losing one child. If it doesn’t work, I don’t know how I’ll ever survive. If I was going to try again – and I desperately wanted to – I needed to know that I wasn’t going to be condemning another innocent baby to death, or months in the NICU and potentially a lifetime of problems. What I found wasn’t very encouraging. A 75% chance that my baby will make it to 24 weeks? No, not good enough. But I found another option. It’s called a transabdominal cerclage, and while it entails a surgery for me, it also nearly guarantees me a full term baby (95% chance of making it to term when placed correctly). Those are very good odds. In fact, they’re nearly identical to a woman who does not have CI.
So why didn’t you tell me about this option? Why don’t you tell women that they have this choice? I know, you think it’s too extreme. You think my loss was a fluke, or that we’ll “wait and see,” or that we’ll place a vaginal cerclage early in the pregnancy and it will probably work. I know, I’m your patient, not my baby, and you want the most minimally invasive and least risky procedure for me. You say “what if that’s not the problem?” So what if it’s not? I will have had an unnecessary surgery, but I will never regret having fought for my babies. But what if it is? If I found out, for certain, that CI is my problem by losing another child, I would never forgive myself. I would always regret not doing everything possible to prevent it. I know that sometimes you distance yourself from pregnancies that don’t end well, but that means you end up treating my baby as a commodity that can be replaced. I know you’re a good doctor, and you’re trying to do your best for me. But you’re missing something important here. I’m a whole package, and my physical health depends not only on my physical well-being, but also on my mental well-being. After my daughter died, like many other bereaved parents, I thought maybe it would be better to just join her. Just trying again (and again, and again) is not an option for me. So while you want to minimize risk to me, I want to minimize the risk to my heart and soul, and that means doing whatever I can to keep my child safe.
And here’s the thing: it’s not your choice. The way I see it, it’s your job as my doctor to give me a run down of treatment options. You tell me their pros and cons, as you see them, and you tell me which one you recommend and why. Then I decide. It’s important that you tell me about all the options, though, because your priorities are not always the same as mine. When you leave out an option that you don’t think is a good one for me, you’re making the choice for me, because you don’t think I’m capable of making the “right” choice. You might find that I won’t make the same choice you would make for me, but you’d better believe that I will consider all my options and choose the one that is right for me and my family. So please, stop treating us like children, and let us decide for ourselves.
Please stop treating me like I’m crazy to go through an extra surgery to help guarantee my child a healthy start. Don’t you understand that I’m already a mother? What mother wouldn’t do that for her baby if she could? Please don’t act like I’m being unreasonable and extreme. Do you know what’s extreme? Holding your child as she breathes her last breaths, her skin growing cold beneath your tears and kisses. I’ve done that, and I would have endured a hundred surgeries to prevent it. If you’re a parent, you already know. I would have died for her. Don’t tell me that a surgery with less risk than a c-section is too extreme.
Doctor, I love and respect you. You’ve spent years educating and training yourself. You have a hard job, and I know you’re doing your best. But please, please trust us enough to give us this choice. And please, above all, stop telling us that we can “always try again.” Even if we have the physical, emotional, and financial wherewithal to try again, nobody can replace the baby we’ve already lost. That baby is not a fetus, or a “product of conception,” or a miscarriage – she was my heart, and my love, unique and beautiful and completely irreplaceable.