Story #90 - Lauren, Allentown PA (USA) - Pregnancy Loss, Omphalocele, Trisomy 18, Termination, COVID & Trauma Informed Care
I found out I was pregnant in October.
It was my first pregnancy.
My first everything.
We had been trying for two or three months and felt lucky it'd worked so quickly.
For the first couple of appointments, everything looked good. Baby measured a week behind, but no one was too concerned; due dates are always iffy.
When I went in in December, I should have been eleven weeks, but they said I was ten. The doctors asked if we wanted to do genetic testing, but we refused. I am a special-ed preschool teacher, and I didn't think testing was relevant. Down syndrome or special needs; we would love this baby. But my husband is from the school of thought that "Knowledge is power," so we ultimately decided to do it.
The maternal-fetal medicine office called us a week later to schedule an appointment, and told us it would have to be after the Holidays, so three weeks later. When I showed up in January, the nurse there told me, "Oh, you're here because your doctor has concerns! Let's check that out." Apparently, my doctor had seen something on my first ultrasound that made him think that the baby had cystic hygroma*, but no one called me over the Christmas break to convey his concerns.
I felt blindsided. And terribly angry.
I was alone at the appointment. The baby should have measured 14 weeks, but it again measured small. The ultrasound tech couldn't get the nuchal translucency numbers, even with an internal ultrasound.
She tech told me the doctor would be there in a minute, and then she left the room. When they both came back, the doctor redid the ultrasound, and I found out that my baby had omphalocele, a rare birth defect that happens when the organs grow outside the belly in a sac.
At this point, they put me in a room to call my husband. They suggested a CVS** or amniocentesis. The CVS had to be done before 14 weeks, so we were running out of time. They didn't have any availabilities at their clinic, so I waited for my husband to come and meet me, and we drove an hour away to a clinic that just so happened to be able to see us that day.
I was livid. Had my OB office called me before the Christmas break, I could have done all the testings beforehand, without rushing, and bring someone with me for support instead of getting this news on my own.
After that day, I never—nor will I ever—talk to my former OB office again.
We did the CVS, and the results came back within four days: inconclusive. They didn't get a big enough sample, so they had us do a full testing panel that would take two more weeks.
While we waited, my doctors and I tried to figure out which organs were outside.
Before the CVS testing, we had also gone through various scenarios with a genetic counselor. In many cases, trisomy 13, 18, or 21 are responsible for omphalocele. These conditions come with a very real possibility for an "incompatible with life" diagnosis, which I couldn't fathom. In other rare cases, babies do just fine with surgery. Although their lives are complicated and full of interventions, they survive. I was holding onto this hope.
But the call came. I was home by myself when I received the news that it was trisomy 18.
Most boys don't live much more than a couple of minutes after birth with trisomy 18. As for girls, the median life expectancy is 15 days. And they are in pain the whole time.
It was devastating.
We didn't know the gender then, and the person over the phone asked if I wanted to know. I didn't, mostly because it would have been too much information to process on my own. I waited for my husband to come home, and we scheduled an appointment with the genetic counselor.
People have to know that there is no right answer in these cases. You can either proceed with the pregnancy, give birth to your baby, and wait until he or she passes. Or you can terminate when you receive the diagnosis. Whichever you choose, it will be unbearable.
Ultimately, we couldn't put our baby through so much suffering, and we decided to move forward with terminating the pregnancy. We met with an incredibly kind counselor. He said that they would start the process of contacting the hospital and our insurances. From start to finish, it was supposed to take about two weeks to schedule and perform a D&C.
But a couple of days after the diagnosis, I found out that my insurance didn't cover pregnancy terminations.
Because insurances in the US are tied to your job, I reached out to my employer. I had to go into details with the school board, which was of course excruciating. They then had to vote regarding whether or not they should make an exception. Luckily, the board voted yes. Then, they communicated with my insurances and vouched for me to make sure I could get the procedure covered.
I had to jump through so many loops to make that surgery happen and the waiting was awful. You know you won't have this baby, but it's growing, and you're caring for it more and more every day that passes.
Thankfully, I had a lot of support from my family, friends, and colleagues, but it took some time to get there. We had to wait for a little over three weeks to be allowed to schedule and have the procedure.
I was "lucky" I could do a D&C. The other option was labor and delivery, and I couldn't have gone through that.
The day before the surgery, they put seaweed sticks inside my vagina to expand my cervix. And that's when the trauma started.
I've dealt with anxiety my whole life but had gotten it under control in the previous years. The physical trauma of the sticks being inserted triggered an even bigger emotional one. I was certain I was going to pass out. I couldn't breathe. After a one-hour long drive, I went home with these sticks inside of me, knowing I had to go back to the following day and say goodbye to my baby. When I arrived home, I crawled in bed and slept until the next morning.
I'd never been in a hospital before. Never had a broken bone or surgery. Luckily, the staff at Lehigh Valley Cedar Crest was wonderful. My in-laws drove us there the day of the procedure. My parents also met us there, with food my aunt had cooked for us. They were so incredibly supportive and loving.
But going to the hospital to terminate a pregnancy is as heart-wrenching as you might imagine.
You hear the chiming of babies being born in the hallways.
You have to discuss what you want to do with the remains.
And the procedure itself is scary.
I remember waking up afterward and asking if I was still pregnant. The nurse smiled kindly, and I realized that I wasn't.
My baby had been taken out of my body, born sleeping.
It was a little girl.
Lauren shared images from her personal archives and quotes that are dear to her heart to accompany her interview. Here’s one of her two beloved dachshunds.
Two nights before the procedure, my dog, who sleeps near my stomach, went crazy. He was pacing around, and we all felt something was wrong. I'm convinced her heart stopped that night. I asked the doctor if she was alive when they took her out, but he never followed up.
Parts of me wishes she had already passed.
I felt physically better after the surgery because the sticks were horrible.
I had this sense of relief for almost a day, but it was my first postpartum experience, and I wasn't prepared for that. I didn't expect the hormones. I'd been on the pill for 12 years before that, and the ups and downs were intense.
I was so upset with my body. I felt like it'd let me down.
To be honest, I still feel this way. It’s normal for your body to change when you're pregnant because you'll have a baby, and it'll be worth it. But now, I can't fit in my pants, and I have nothing to show for it.
You read all these books about pregnancy and birth, but there are no postpartum books that truly tell you what to expect in case of a loss. I wish someone would have told me. I wish someone would have explained to me that these things happen. Not to scare me, but to make me aware.
After the procedure, I developed a UTI.
Because of this, I went back for my follow up earlier than I was supposed to. When I pulled into the parking lot, I started crying. I couldn't stop. That was the same place I'd been given the terrible news on my own. When I got in, the staff rushed me through the waiting area and were incredibly compassionate. I never felt judged. They talked to me about anxiety and medications and how it was very common to be put on them after such a difficult loss.
I eventually needed anxiolytics because the anxiety had become debilitating. I also started seeing a therapist—less in person since the pandemic—, but it's helpful to unpack my experience and emotions.
I have been told that the chance of that happening again is 0.02%.
We're simply the unlucky ones of the statistics.
My surgeon, who was male, told me, "You can start to conceive after one cycle, no problem!" But my female nurse practitioner suggested three to six months. She said, "Although you can physically get pregnant, it doesn't mean that you are emotionally healed."
Grief is mental. And it takes up all the space. It's also different for my husband. For him, I think this baby was more abstract. It was very real to me. Growing inside my flesh.
My aunt was kind enough to take care of the paperwork regarding my daughter's remains before I got the procedure.
She used to work in a nursing home and had to deal with the remains of her own baby, so she knew. I didn't want to make any decision that I'd regret, but I couldn't bear to have the ashes at my home. So she still has them. I haven't gone there yet. Anyway, you can't do anything with the quarantine.
Pennsylvania has had the shelter in place for more than a month. Schools closed on March 16, but I actually went back to work the week after I lost her. People were like, "You've got to keep your mind busy! Go back to work!" but I became overwhelmed very quickly.
I remember being sent on a field trip, and there was a pregnant woman with us. I wasn't warned or prepared for that shock. I also had a pregnant friend who got ready to get her second child. I didn't want to feel jealous, but it was difficult not to envy her.
Everyone was very supportive before and during the procedure. I would receive texts and calls, asking, "What's next?" But after the surgery, everyone disappeared. There is no more "what's next" after a termination. You simply drive away from the hospital without your child; heart heavy, and empty-handed.
In the weeks that followed her birth, I longed to talk about her and tell her story. But people's responses were disappointing. Every time I would mention her at work or in my inner circles, people would say, "I'm not talking about it because I don't want to upset you by bringing it up." The thing is, you can't "bring up" something that is always there.
I also had a lot of, "God has a plan. Everything happens for a reason." They mean well, but it always makes it worse.
I never announced the pregnancy on social media. We were going to do it around Christmas, but we somehow decided to wait. My husband kept asking for it, but something was holding me back.
I had already shared the news with some close friends and coworkers, because we attended events together and I couldn't drink. Had I known, I would not have done it. Someone told me once, "Well, at least you're still a dog mama!" Who says that?!
In a way, quarantine came as a blessing. I don't have to put myself into difficult situations anymore.
I would probably have done part-time had I gone back to in-person teaching because eight hours was too long. I did put on a shell, of course, when I went back soon after the termination, but kids sense your energy. It felt like living a double life. I would come back home exhausted and cry every single night.
There was a moment recently where I didn't cry for four hours—which was my daily normal—, and I felt guilty. As if I was forgetting about my baby.
Parts of me still go through this roller coaster of emotions every day, and I'm not sure how much of it is postpartum-related or grief. The interconnection between both is definitely confusing.
I'm lucky to have my husband and mom in these moments, although recently, I feel like often use them as my punching bags.
I'm not proud of that.
My mom lives an hour away, and she's also grieving her grandchild. I want to assume that the hormones make me meaner than I am, but the anger is sometimes gutting. I texted her the other day when my periods came. I told her, "I should be pregnant right now!" I can't remember what she told me, but I snapped. "Everything I say upsets you," she said. "When I try to reassure you, I'm a bad mom!" To what I responded, "Well at least you have the opportunity to be a mom."
It was unfair.
But deep down, this is how I feel.
The presence of my baby is everywhere. I had just bought maternity clothes and had to return them. I was scared the store would ask me why or be rude about it, but no one said anything. In a way, their silence was worse.
I was dealing with the bills from my surgery the other day, and on one of the invoices, it said "abortion." I never thought of it that way, although of course it is the same procedure. I prefer the word "termination" because there's a huge stigma around abortion, especially in this part of the country.
One week before the procedure, my husband and I went to an Escape Room. I'm terrible at it, but it was a nice distraction from what was ahead. On our way there, we drove by a protest against late-term abortion. It was awful because it made me realize that I should have considered what I was about to do as something wrong. Shame came flooding in. Once we got there, I began crying in the escape room. I couldn't stop.
I'd seen protests before, but I always thought, "It'll never be me." And there I was, having to undergo a procedure that I didn't want, but that I had to do because my baby wasn't going to survive her birth.
I was pro-choice before, and still am. I wanted to scream at the protesters: "There is NO choice here!" You either let your baby grow, be born to suffer, and slowly watch it die, or someone takes it from inside you. Terminating was something I had to do to protect my baby like, something any other mother would have done. I "decided" to end the pregnancy because I didn't want my child to suffer.
What does it mean to be a parent when your baby dies before you even got to meet her? I never held her, so am I not a mom? When does that happen anyway? When can you get that title?
I was having that discussion the other day with my mom. At some point, I told her, "Did you ever have to make the kind of decision I just made, in the best interest of your child?" She said, "No, I haven't."
If what I did does not make me a parent, I don't know what does.
The thing that was best for my baby was the worst thing that could have ever happen to me. I followed all the rules. And I still lost her. To this day, I still feel I should have been able to do something to save my daughter.
Although we didn't publicly announce my pregnancy, I'm posting things on social media about grief. I guess it's my quiet way to fight the stigma that surrounds pregnancy terminations.
After I came out, many people of my entourage reached out, telling me they had gone through the same thing. They had said it was "just a miscarriage," but in many cases, they underwent D&Cs and never told anyone.
March 18 is Trisomy 18 Awareness Day, so I posted something about it for the first time to spread awareness. I shared a picture of the ultrasound. On it, she looked perfect, but we know she wasn't. I didn't go into full detail, but I said that our baby was no longer with us.
I've received so much support from it since. Nothing negative. Just love. And that felt nice. There are still many people who won't reach out because they don't know what to say. Some have very strong religious beliefs, so it was difficult to pick who to tell. To my face, they will never say anything, though.
Lots of friends used to tell me, "We won't do genetic testings because it doesn't matter: we would never terminate a pregnancy." I feel compelled to educate people now because nothing is ever all black and all white.
I’ve also unfollowed everyone that has pictures of children to protect myself. The quarantine adds another complicated layer to how we perceive people's lives on social media. I read about women complaining about giving birth by themselves, and I'm like, "Right, what's so terrible about it. At least your baby lives." But then I remember many of them will also have to go through what I went through, but alone, because of COVID.
I struggle to move forward. I'm trying to pull myself back together because to be in this raw place is hard, and there are so many ups and downs.
Mother's Day, for example, has been awful this year. I told my husband, “You better do' something about it!”
We're also navigating how we feel about conceiving again. It's usually not something you think about right after giving birth. I'm usually the optimist in the relationship, but now it's up to my husband. He tells me, "We conceived once, we can do it again!" But I'm scared. I don't think that "good things happen to good people" anymore.
Right after the procedure, I felt like I deserved to be in constant pain. Getting a UTI, for example, was a punishment that I deserved. My child had gone through so much worse, so I should handle the infection without complaining. For about a month after the procedure, I was under the impression that the physical pain needed to match the emotional one. If one were lesser than the other one, I'd panic.
It's a dark place to be.
What we've gone through is very traumatic. Details become so important and painful. I'm counting the days before an estimated due day for a baby who won't come. I was supposed to have a baby shower last week. Every time I know an important date will happen, I try to prepare myself. My husband thinks I'm "planning" to be sad, but it's not that. Dates are what keeps me afloat right now. They give a sense of realness to what happened to me. I can hold on to them.
Two weeks after the procedure, I had the overwhelming feeling that her name was Lily. Easter was the holiday I always celebrated with my grandma, and it reminds me of spring and flowers. We decided to tell close friends and family that she deserved a name. She's part of our family now, and I don't want her to be referred to as "the baby." I ended up having a ring made that I will wear near my wedding ring. The symbolism is necessary. It's something positive that helps me stay strong and not just angry at the world or utterly depressed.
I'm slowly healing through storytelling because I can't keep feeling so much shame. I found a support group online for people who ended wanted pregnancies. It's been helpful to see other people's stories. We're around 1500 or 2000 on it, and everyone is beyond careful and kind.
I keep telling myself that I just have to go through it one day at a time. People are so productive during this pandemic! But if some days I only do laundry, it's a success. Venting is also ok. I try to be gentle with myself.
But it’s complicated: I'm at peace with my decision, and I hate, with all my heart, that it had to happen.
* Cystic hygroma (CH) is characterized by abnormal accumulation of fluid in the region of the fetal neck and is a major anomaly associated with aneuploidy.
**Chorionic villus sampling (CVS) is a prenatal test used to detect birth defects, genetic diseases, and other problems during pregnancy. During the test, a small sample of cells (called chorionic villi) is taken from the placenta where it attaches to the uterus wall.