I Lost My Baby. So Why Am I Left Out of Pregnancy Loss Groups?

It’s Pregnancy and Infant Loss Awareness Month, but there’s still no awareness about a certain group.

When I was pregnant, my biggest fear at every ultrasound was that there would be no heartbeat.

I didn’t know it could be worse. I didn’t know that what was worse was about to happen to me.

This month should be different

October 12, 2023, is the date I should be giving birth to my daughter Evelyn. I should be prepping for a baby, getting the nursery ready, taking birth classes, having a baby shower, reading the baby books — doing it all.

Instead, my womb is empty and I’m back to my pre-pregnancy life. Except that life doesn’t exist anymore.

On May 16, I received the news that would alter my life forever.

When I went in for my 18-week anatomy ultrasound, I learned that my daughter had a severe form of skeletal dysplasia. The MFM (maternal fetal medicine) doctor could not determine whether or not it was lethal.

But one thing was certain — this situation was serious. Our daughter’s bones were not growing the way they should. If she did survive (which was questionable), she would live a compromised quality of life.

On May 16, I heard a heartbeat. I wish I hadn’t.

My husband and I were forced to make the most difficult decision of our lives. We chose to terminate the pregnancy.

On May 19th, we said goodbye to Evelyn when I was 19 weeks pregnant.

What is a TFMR and why aren’t we talking about it?

October is Pregnancy and Infant Loss Awareness Month. It also happens to be what was supposed to be Evelyn’s birth month. What should have been the best month of my life is turning out to be the most painful.

For Pregnancy and Infant Loss Awareness Month, there is a lot of talk about miscarriage, stillbirth, and infant loss. But what about TFMR (termination for medical reasons)?

No one is talking about us. We fall under the category of pregnancy loss, but that acronym is barely mentioned.

This month feels especially hurtful because it is not acknowledging all the pregnancy losses. Doesn’t seem too aware, does it?

We already don’t talk enough about pregnancy loss. Whether it’s a miscarriage, a stillbirth, or a TFMR, it happens all the time and we hardly talk about it.

But if we do, it’s usually either a miscarriage or a stillbirth. When was the last time you heard of someone having a TFMR?

I had never even heard that acronym until I had one myself. It’s something I knew happened, but assumed it was rare and only happened in the most extreme cases.

Then it happened to me.

Where is the support for us?

I went online and searched for support groups. I signed up for the first pregnancy loss group I could find. I read the description: miscarriage, moms, SIDS, loss. The words “miscarriage” and “SIDS” stood out to me. I didn’t have either one of those.

I had a termination, but that wasn’t on their list. Was I allowed there? Would I be judged for terminating my much-wanted pregnancy?

I still showed up to the support group, scared to even use the word “termination” out of fear I’d be shunned. Thankfully, these other women welcomed me.

However, that didn’t keep me from feeling like I didn’t belong, like the loss I experienced was different from theirs. Where could I find the other TFMR moms? Was I the only one?

After much more searching online, I finally found what I was looking for: a support group for TFMR, then another, and another. The groups were out there but were a challenge to find.

When I attended the first support group, I was surprised by how many women were there. I wasn’t the only one. Numerous women had TFMRs. Some had lethal diagnoses, some had grey diagnoses like me, and some others knew their baby could survive but couldn’t thrive.

We were all there, sharing our stories, and I realized that this wasn’t a rare occurrence at all. It only seems rare because no one talks about it. A combination of shame, guilt, and fear of being judged has kept many women from speaking their whole truth when sharing the story of their pregnancy loss.

I’m saddened by the number of women who have literally no one to talk to outside of our support group because of the shame it brings them. Which is heart breaking.

There is no shame in doing what’s right for your baby.

So, no one talks about it. We just say we “lost our baby” and most people just assume we had a miscarriage. We’re left out of the conversation.

Even in this month, which is supposed to be Pregnancy and Infant Loss Awareness Month, we’re ignored. I see images on social media sharing support for “miscarriage, stillbirth, and infant loss.”

What about us? Why are we being left out of the picture? If we’re going to call this “awareness month,” shouldn’t we be more aware of this?

If we all spoke our truth, our whole truth, everyone would know how common TFMRs really are. In fact, TFMRs are three times more common than stillbirths and infant deaths combined.

The majority of pregnancies where a major congenital fetal abnormality is detected end in TFMR.

Our rights to health care are being taken away

When Roe v. Wade was overturned in June of 2022, I never imagined the impact would affect me. I’m in my 40s and trying desperately to conceive. Why would I ever want an abortion?

Yet here I was, one year later, choosing to terminate my pregnancy.

There is no modern time scarier for women in the US than right now.

There’s absolutely nothing lucky about my situation, but in the unluckiest of moments, at least I lived in California. As much as I hated making my decision (which hardly seemed like a choice, given the circumstances), at least I could make that decision.

At least I had a healthcare team that treated me with dignity during the procedure and never questioned my decision. At least my $25,000 hospital bill was covered by insurance.

There are women in other states who are not afforded that. Some of these women are in my support groups. These women were forced to make the same decision I made, but did not have the resources I had.

Many had to make the decision quickly because they were cutting it close to the legal gestational age for abortions. Many others had to cross state lines. Most of them are fighting their insurance companies to pay their astronomical medical bills because the procedure isn’t considered necessary health care.

Post-Roe, there are now 12 states that have a near-total ban, two states where the ban is not enforced but abortion is unavailable, and four states with gestational age bans. Additionally, there are three more states that may ban or restrict abortion.

These statistics are terrifying. This is not “pro-life.” This is anti-woman.

So when we ask why we aren’t talking about TFMRs, this is why. It’s not safe to talk about it. Which leaves us out of the picture when we discuss pregnancy loss.

Women are so scared to talk about it that we’re shut out of the conversation. We layer shame and guilt on top of our grief.

No one should grieve their child like that.

We need to break the silence

In honor of Pregnancy and Infant Loss Awareness Month, I share my story in hopes of educating the public about TFMRs.

I share my story in hopes that I will make another TFMR mother feel less shame and less alone.

I share this to let everyone know that abortion is more than just a choice. It is healthcare.

Pregnancy loss is devastating. The grief is unfathomable and no one should have to experience it. To add the stigma of shame on top of that is inhumane.

Let us grieve our babies without judgment. We didn’t choose this predicament. All we chose was to end our babies’ suffering.