I’m trying to stay positive, and I’m thankful for the time I did have with Ada, but I also feel so betrayed.
I should be glowing, getting big and round, feeling Ada moving and swooshing inside me. Instead my body is deflated and broken with nothing to show for it. I lay here in pain, with a heating pad to soothe my aching uterus, ice packs to soothe my aching breasts, writing these words and clutching a stuffed wolf that I’ve scented with baby powder to try to soothe my aching heart during another restless, sleepless night.
Betrayed by my body. It made a baby that couldn’t survive, if that is what caused her death. It didn’t protect her from external trauma, if that is what caused her death. It did not provide her with a safe place to grow, if that is what caused her death. No matter the cause, my body let our precious Ada die without letting me know something was wrong, without giving me a chance to save her or to say goodbye while she was alive.
Betrayed by my doctors and nurses, betrayed by the pregnancy books and websites. Ada was thoroughly tested. Down syndrome happens in about one in a thousand births, but she was tested. Limb and organ deformities are also about one in a thousand but she was tested. She passed all her tests with flying colors and we were told we were home free. Healthy baby, healthy pregnancy. No one ever said, “I’m sorry, but you should know that one in one hundred sixty (some sources say one in one hundred) pregnancies end in stillbirth, including during the second trimester. We don’t want to scare you, but we want you to be prepared just in case.” Just having that knowledge would not make this any easier but at least I could have been slightly mentally prepared. We were prepared for every contingency, for physical or mental disability, for my death in childbirth, for so many things. But never for this.
Betrayed by the system that cares for our bodies but not our hearts. Once I learned that Ada had passed, I was counseled on physical options but mental health options were never mentioned. No one suggested that I contact a photographer that would have documented Ada’s tiny body for free. No one asked if I wanted a photo with her. No one asked if I wanted to touch her, to bathe her, to dress her. I was too scared, drugged, sick, out of my mind with sadness, to research these things or think about them when I had the chance but once I realized what I wanted, what I needed, it was too late. I never touched her skin or even saw her tiny hands. This I will always, always regret.
Betrayed by the National Institute of Chid Health and Human Development, betrayed by the CDC, betrayed by medical researchers everywhere. In 50% of stillbirths, no cause is found. Yet there’s barely any research on the subject. Stillbirth is lumped with SIDS when it should be grouped with premature birth. Many stillbirths are caused by placental problems (partial separation, blood clots, etc) or cord problems (twisting, knots, blood clots, etc) but there are no requirements to examine the cord or placenta during development even though steps can be taken to try to save the baby in some cases. What percentage of cases? Who knows – there’s too little research and too little reporting. Stillbirth is a secret epidemic and no one seems to care.
Betrayed by all women who have borne a stillborn baby, betrayed by the world. Now that I have joined the much too large “club” of babylost mothers, I know there are dozens of foundations with goals of advocacy and consolation. While I’m glad they exist, why didn’t I hear about them before? Why didn’t they notify me while I was pregnant that this was a possibility? Why isn’t there at least a pamphlet for my doctor to give me when I learned Ada had passed so I could plan to better honor the time I had with her? Why do families start a new foundation, rather than join forces with an existing one? Stillbirth advocacy is too fragmented to accomplish much. And it doesn’t help that so many women feel pressure to bear their pain in secrecy. Society needs to bring this too-common problem into the open, to put aside political divides, to find ways to save these very much wanted babies or at least acknowledge their existence.
I don’t want to scare anyone, I don’t want to bring worry or concern to my sisters who are growing babies. But I have a responsibility to tell them that there is a risk. To tell them to do kick counts and to document the regular patterns of their bodies and their baby so they will know before it is too late if there is a change. I have a responsibility to be an advocate for babies like Ada, to fight for them as I was not able to fight for her. I don’t know yet what that means, but this blog is one step.