Betrayed

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.

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11 thoughts on “Betrayed

  1. So sorry this happened…. I can’t imagine the pain it is bringing your heart, head and body. Know we are all sending you healing thoughts.

  2. Ivan Baxter says:

    Anastasia- I am so sorry to hear about your devastating loss. My first child Ben died from complications in child birth, so I know that there is anything to say that really ‘helps’, It. Just. Sucks.

    If you need any advice from an atheist who has been through the process (or anything at all), drop me an email. (if you can’t see the one used to leave this comment, I’m in the ARS directory).

    I wish you peace in this horrible time.

  3. Jen says:

    I am so, so sorry for your loss.

    It is infuriating that we aren’t warned. That we aren’t supported emotionally by our medical caregivers. That the research isn’t being done and steps aren’t being made to publicize pregnancy loss (or infertility, for that matter). It is a medical problem like any other and needs to be treated as such, and not as some nebulous “tragedy.” It IS tragic – how could anyone say otherwise – but it is also MEDICAL. There are causes and there may be solutions. But we’ll never know them unless the word gets out and people start to see it that way.

    My ob/gyn office sells pregnancy-friendly skin care products in a beautiful little boutique off the waiting room, and has arrangements with local massage therapists for their patients’ aches. But they do not have a grief counselor. I received a binder full of important prenatal information when I first came in for my pregnancy test, but not so much as a post-it note with advice on how to handle my miscarriage, either medically or emotionally. When I called them for help, crushed by grief and guilt, the receptionist had to put me on hold while she looked through a phone book because she was sure “there’s a support program at one of the hospitals for infant loss…” I hung up before she came back.

    I found writing to be helpful too, but unlike you I haven’t been able to come out in public about it. I desperately want to – I think that it would be a weight off my shoulders and may serve as a push for others to do the same and pull this shared pain out of the darkness in which we’re expected to suffer. My husband, though, prefers to grieve privately. I haven’t found a way to make us both happy, so I write and I hide it, keeping it for myself.

    I’ve put it all behind me (well, no, not really, but I guess I have to pretend I have), but your post has reminded me how angry I was at the practice for their lack of comprehensive care. I’d written a letter to them and never sent it. I am putting a stamp on it today. Thank you.

    • Anastasia says:

      Jen, I am so happy that you are sending that letter. If we can even help one family going through this terrible loss, then we are bettering the world.

      I am planning to write a pamphlet that could be given to parents when they learn their baby has no heartbeat. Then, hopefully, the family will be able to plan ahead and bring things to the hospital like a handprint kit and baby clothes. We were so much in shock that it didn’t occur to us how important those moments with our baby would be.

      That’s just one part of the picture, though. I don’t understand why there isn’t more research, or why no one tells us that there is a risk. It’s so frustrating that this happens to almost 30 thousand women a year just in the US but it’s like it’s all a massive secret.

    • Anastasia says:

      I forgot to add – why not write anonymously? I thought about staying anon for a bit, but since I’m pretty open about my life on social media and everyone already knew I was pregnant with Ada it just felt right to keep my name on things… but I totally understand why someone would want to keep things more private. If you do start an anonymous blog with your writings about your baby and your healing process, please let me know! Also, please let me know if I can help in any way, I’ve been blogging a long time.

      • Jen says:

        I’ve thought about doing it anonymously. But doing that keeps it, well, anonymous. It’s not a real story with a face and a name. Part of writing is about healing, but for me it’s also about awareness and advocacy. I feel that if I don’t act, if I don’t get my voice out there and scream so people can see what loss does to a person, what infertility does to a person, then it stays a massive secret. Who will read the anonymous blog if nobody knows it exists? How can I change public perceptions about these issues if I’m not public about it myself?

        I’ve written about infertility on my blog but I purposely stayed vague about it – I’m sure my husband isn’t happy about it but he hasn’t said anything. I’ve also written about my loss, which was much harder to do, on a LiveJournal that none of my “real-life” friends know about. I’d be happy to share those with you, or share them here as links in a comment, if you’d like.

      • Anastasia says:

        I’d love to read your story if you’re willing to share it with me. You can email a link to geneticmaize at gmail.

  4. applpy says:

    I am so sorry to hear of your loss. I remember being there myself, there is not much anyone else can do or say to make the healing happen but know that this too shall pass. You and your husband are in my thoughts and prayers. Also, just something that worked for me, if you need to cry by yourself, not see people (I did all that), then do so, we need ot heal before we can look ahead.

  5. enkidu97 says:

    “Stillbirth is a secret epidemic and no one seems to care.” It is CRAZY how common it is yet often goes unspoken. My aunt had a stillborn daughter and I had no clue until the day SHE died, and her children’s names were read at her funeral. My cousin had a stillborn son. When I lost my son, my boss told me that he and his wife also experienced this loss.

    It is also beyond frustrating that the causes go largely unknown. You are left to second-guess yourself and play the “what-if?” game which will drive you to the brink. I feel for you, I wish I could help in some way. I know it sucks, but I also know you will find a way to work through it.

    Just know that reading your posts now, Ada has touched MY life, and I am glad for that. Our little ones live through us. Their lives had meaning, they made us better people.

  6. carolyncares says:

    So sorry for your loss, Anastasia. There are no words that can take away the pain…all I can offer is a virtual hug and shoulder.

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