I Was Supposed To Have A Baby
I Was Supposed To Have A Baby: This is the online support platform aimed at fostering dialogue, helping educate and create safe spaces for those who have experienced pregnancy and infancy loss. Aimee Baron MD, the woman behind the platform and social network, shares with us a little about her losses, her journey and the future.
By Aimee Baron MD, Founder and Executive Director, I Was Supposed to Have a Baby
As I lay in my bed sobbing after my first miscarriage, I felt so alone.
Having just been through 2 years of secondary infertility, I finally got pregnant with Clomid and an IUI (intrauterine insemination). To say that we were elated would be an understatement. I was already planning our summer, thinking about when the baby was due. We started talking about names. I felt like I deserved this pregnancy because it has taken so long to get here. But, my body failed me. My baby died. And the isolation that I felt during our fertility journey turned into a hopeless and deep depression.
The year was 2005, and no one was talking about infertility or pregnancy loss, let alone cancer, mental illness, or addiction. Fertility treatments and miscarriages were not mentioned on daytime TV, movies or in the newspaper. It was clear that it was something shameful, something secretive, and I was told by many to get over it and move on. Throughout the next eight years, I lost five more babies (four in the second trimester), and every time it happened, I sank further and further into the abyss.
The only reason I didn’t stay down there was because of Rebecca. Rebecca was the sister of a friend of mine. She also had many miscarriages, so she was the only one who understood when I was a mess. She never told me to get over it. She let me cry and cry and cry until I had no more tears left. And when that happened, while fighting back her own tears, she hugged me until I was ready to let go.
At the time, it was exactly what I needed.
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On a societal level, we are finally talking about the struggle some families go through to have a baby. I don't think that anything has seriously shifted in the last five or so years; the statistics are the same (1 in 8 couples experience infertility, 1 in 4 pregnancies end in a miscarriage). But instead, it’s that we are finally in a place to talk about difficult things. We recognize that infertility and loss are usually not someone’s fault. Instead, it is something universal that binds all of us, regardless of race, geography or creed. And because the desire to have a child is a fundamental biological need, it affects all of us. So we are finally talking about it- in synagogues and churches, at community programming, with virtual or in-person support groups, offering financial aid packages, educating and training health care workers or clergy. These initiatives have all popped up in the last decade or so, and they each do vital work on the ground, every single day.
And yet, even though the statistics identify the need- we know so many are suffering- people don’t show up to these programs. Fliers get printed, presentations get honed, mass marketing and email blasts go out, and only a tiny fraction of those affected show up. Why?
Perhaps it’s because society is still not at a place where individuals or families are ready to “out” themselves in such a public way. Maybe it’s still too hard to admit to themselves that they are struggling, let alone to be thought of as “infertile”- the pressure within a group of peers just feels too much. Having been through it myself, I understand better than many, that for those trying to have a child, the process is invasive and stressful. Being poked and prodded during dozens of early morning doctor appointments is enormously painful, and those individuals just want their evenings/weekends to themselves. For some, the crushing disappointment of a loss or another failed cycle is so devastating, that it is all they can do to get out of bed and go to work. So I understand, another program, even of a supportive nature, is just too hard.
It is for this reason that I launched 'I Was Supposed to Have a Baby' (IWSTHAB)- to change all of that. Having been through years of pain and suffering, and not leaving my bedroom for weeks on end, I would have loved a virtual space to share my struggles and read about others going through similar challenges. With technology and educational access in the palm of our hands, people are using smartphones to chart menstrual cycles, to remind them which side of the abdomen to inject their IVF meds, what day/time is that appointment for a second opinion, and to decide which yoga studio/acupuncturist/therapist is the best.
So why not offer support as well? The uniqueness of IWSTHAB is not only the model of support; it's the method the support is delivered. IWSTHAB was born from the idea that online/social media support for families in my community struggling to have a child was effectively nonexistent. So I realized that I needed to bring the support to them, into the palm of their hands.
Through IWSTHAB, you can read about someone’s stillbirth online at the post office or surrounded by tear-filled tissues at 2am in your own bed. One can ask the help of thousands just like you, about what to expect from a D&C, or how to keep the romance alive while struggling. You can “out” yourself and create an account with your real name, or you can become “abc123.” You can just read and absorb the information, feeling validated with the knowledge that you are not alone (I have women coming up to me in the supermarket who whisper, “I read everything you put and it’s amazing! But, I don’t follow you because I am too scared to talk about this now" or "I don’t want people to know I’m struggling"). Alternatively, you can become an active part of this robust community, by commenting, liking, sharing. The choice is yours. Take as much as you want, and use the things that apply to you.
Day by day, I watch the numbers of followers grow steadily, so I know that the work we are doing is successful. I read the many messages I receive daily, thanking me for creating this community, this vital space. So many people expressed how they wished that it had existed when they were going through their loss, and are so grateful it exists now. I get contacted by friends, neighbours, relatives of someone who is going through “something,” and I get asked for advice about how to support them best. They want assistance about how to address a topic that was for so long was taboo- spoken about only in hushed tones. And the fact that IWSTHAB has grown exponentially since its inception is encouraging, but I know that there is still so much more work to be done. There are pockets of the world where these topics are still taboo. For example, those who are not on social media don’t know that safe spaces exist to have these kinds of discussions and get support without compromising anyone’s privacy or specific circumstances. And then there is an older generation, who think that one doesn’t have to grieve after the loss of a pregnancy (because they didn’t do that), or that upon having another child after loss is enough to pull you through. They don’t understand the value of a support system to discuss difficult topics. They are convinced that they did it the right way, and we are all too open and share way too much.
But I know this work is crucial. At the end of the day, whether someone wants to share the difficulty he/she have had conceiving or the seven-week miscarriage he/she just had, that is their personal decision. Each individual/family unit has to determine what feels most comfortable for him/them. And IWSTHAB is there to make it possible. But, we, as a society, have an obligation not to make someone marginalized when they do decide to share. Fertility struggles are particularly painful because they go to the core of who someone is as a human being (feeling like a failure because you can’t procreate, or “lost a pregnancy – as if it was your fault). We need to become more compassionate, sympathetic, and give them room to share. It's a complicated and delicate balance because listening is key, but offering advice is inappropriate. You need to be supportive- helping to create a safe space to share, because when people know that you are there for them, truly there, they will never feel alone again.
More about the Author:
Aimee Baron MD, FAAP, is the founder and executive director of I Was Supposed to Have a Baby, a nonprofit organization that utilizes social media to support Jewish individuals and families as they are struggling to have a child. It provides a warm and nurturing space for those going through infertility, pregnancy loss, infant loss, surrogacy or adoption, in addition to connecting those suffering with resources in the Jewish community at large.
Dr. Baron was formerly the Director of Innovation and Growth at NechamaComfort, and has also worked as an Attending Pediatrician in the Newborn Nursery and Neonatal Intensive Care Unit at St. Luke’s-Roosevelt Hospital before taking a leave of absence after her third miscarriage. She lives in New York with her husband and children.
The I Was Supposed to Have a Baby website is currently in development. While you wait for its arrival you can follow and participate in the current IWSTOHAB instagram platform here, facebook platform here or watch their online youtube channel here.
For more personal stories of love and loss, grief and support from the Wrapt Community you can follow the link to the series here.