It’s so funny the random details you remember about a terrible day. I will never forget that we went to Trader Joe’s just before the amniocentesis procedure that ultimately ended my perfectly healthy son’s life.
In chatting with the cashier at checkout, we explained why we were in town and they kindly gave us a complimentary reusable freezer bag to keep our groceries fresh on the long ride home—and wished us luck at the appointment. I remember being struck by how kind that was. A week later, when I came across the bag in our laundry room, I had to give it away because it was now forever connected to the day our son died.
Now that you know where this story ends, let me backup and tell you how we got here.
We started trying to get pregnant with our second child just after our daughter’s first birthday. I stopped taking birth control when she was nine months old and weaned her from breastfeeding at 13 months. These two big hormonal shifts meant that, while I was trying to track everything in an app, my cycle was really inconsistent, so the app’s predictions weren’t really accurate.
Based on the app’s data, I took a pregnancy test on what was supposed to be the first day of my missed period, but it came back negative. When my period still hadn’t arrived two weeks later, I took another one and it was positive—I was thrilled! The first thing I wanted to do was download the pregnancy apps that calculate my due date and give updates on the size of my baby each week. But, with the inconsistency in my cycle, I really didn’t know how far along I was.
Early Pregnancy Concerns
I called our local OB/GYN immediately, but they couldn’t get me in for an ultrasound for a month. That made me anxious. Prior to the birth of my daughter, I’d had two early miscarriages and the trauma of those experiences made me nervous to wait so long to confirm the pregnancy was viable. I called our local Hope Crisis Pregnancy Center and was able to get an appointment that week.
I went in for a first ultrasound for this (my third) pregnancy, at what would have been week 6 if my dating was correct. Unfortunately there was no heartbeat—just a gestational sac—so they told me to come back in two weeks.
Thankfully, this time, there was a heartbeat. As predicted, the measurements during this ultrasound put me at about two weeks less far along than my first assumption based on my last period. With tentative excitement, I looked forward to my first “official” ultrasound with my OB/GYN office.
A Frustrating Wait
When the appointment date arrived, my husband and daughter came with me and we were all excited to see the heartbeat confirmed—again. During that ultrasound, the tech said she thought I was measuring roughly a week behind expected based on the date of my last period, but when the doctor reviewed her results afterward, they decided to stick with the due date calculation based on my period.
That frustrated me because I knew that due date was off and didn’t want to be pressured into an earlier delivery. I decided to get my records from the ultrasounds I had at the pregnancy center to try to convince my OB/GYN to change my due date.
High-Risk Results and Amniocentesis
Three weeks later was my next appointment, which included a blood draw for genetic testing. I was really excited about this because it also meant we would find out the baby’s sex. I came to the appointment with the early-ultrasound records in hand and, after they took my blood, I met with a midwife who thankfully did listen to me express my concerns that I was less far along than their records listed.
I had printed a calendar with my last period, the potential dates of conception, which I was recording in an app and the dates and results of each of my early ultrasounds. Thankfully, she listened and formally changed my record to reflect a due date two weeks later, making me a little over 10 weeks along.
I asked if this change would affect the results of the blood draw I had just done, and she said it was possible and that, if anything “looked funny,” they would draw my blood again.
Sure enough, when the results came back 12 days later, the report did not include a sex and said I was “high risk for trisomy 18, trisomy 13 and triploidy.” It certainly wasn’t the results I wanted—but the midwife had warned me that this could happen, so I just chalked it up to not being far enough along when they drew my blood. The testing company recommended a redraw and I was told to come that afternoon to have it retaken.
Because we’d told our friends and family ahead of time that we were finding out the gender, we had to bat off plenty of questions. I explained—way too many times—the situation, but didn’t mention the high-risk results to anyone other than my husband.
The next day, I scheduled a phone consult with the genetic counselor at the company that did the blood testing. They explained that the high-risk results were not actually based on my blood—but on an algorithm. My sample had come back with an “insufficient fetal fraction,” meaning the percentage of the baby’s blood in my blood wasn’t high enough for them to do any testing. The report that said “high risk for trisomy 18, trisomy 13 and triploidy” was not specific to my baby’s blood. Instead, those results were based on the company’s research. Apparently, a low fetal fraction can be the result of a smaller placenta, which is correlated with those disorders, and that’s how they projected a 1 in 17 chance of the baby having those disorders.
Ten days later the test results came back and, sadly, they were the same. The fetal fraction was still too low to test. So, while this was less likely to be attributed to not being far enough along, it still didn’t mean with any certainty that anything was wrong.
The next step was to set up an appointment with a Maternal Fetal Medicine Specialist in a larger city about an hour and a half away. We had a Zoom meeting beforehand where they explained that the first two tests were based on placental DNA in my blood and were just risk screenings. In other words, they couldn’t formally diagnose anything. The only way to do that is to have an amniocentesis, which is a 15-inch needle through my belly to extract amniotic fluid and test the baby’s DNA directly. The other option was to wait until the 20-week ultrasound to see if anything looked abnormal. However, that still left room for error.
Unfortunately, we didn’t have time to wait until 20 weeks. We had already decided we would terminate the pregnancy if we found out the baby was going to be born with any of these disorders described as “incompatible with life,” and, at that time, in our state of North Carolina, you could only terminate a pregnancy before 20 weeks. (FYI that threshold is now down to 12 weeks.)
We decided to go forward with the amniocentesis because we didn’t want to put ourselves or the baby through that suffering. We looked into the risks of pregnancy loss after an amniocentesis, which were about 1 in 200, or less than 1 percent. It seemed like a simple math problem: we were being told there was a 1 in 17 chance that our baby had a disorder incompatible with life and only a 1 in 200 chance that an amniocentesis would be the wrong choice. We scheduled the appointment for roughly two weeks later, when I would be 16 weeks and two days along.
A Traumatic Procedure
The appointment started out with the ultrasound tech coming in to make sure my membranes were fused together and that I was far enough along to do the procedure in the first place, which I was. Next, a provider came in and introduced herself as a “fellow” under doctor so-and-so, and asked if I was comfortable having her do the procedure. The only question I asked was whether or not she had done this procedure before, which she assured me she had.
A people pleaser by nature, I didn’t even ask what she meant by “fellow” because I didn’t want to be rude. I’ve since learned that a fellow is a physician who is learning about a certain specialty and still practicing under supervision of other physicians in that specialty. It never occurred to me to say ‘no.’ This is something I still regret immensely.
I laid on the table with my dress pulled up over my belly and my husband stood beside my left shoulder holding my hand. On my left side, were the supervising doctor and an ultrasound technician. On my right side, were the ultrasound machine and the fellow, holding a very large needle.
I took a deep breath and stared at the ceiling, focusing on the fact that I was enduring this to take care of my child and potentially prevent their suffering.
With the needle in one hand and the ultrasound wand in the other so she could see where it was going, she stuck the needle into my belly. After a few seconds, she realized she was unable to reach my uterus. My husband was watching and, after the fact, told me that she would lose sight of the needle on the ultrasound and have to move it around to try to find it again. Obviously, it was really uncomfortable. After a moment, she asked the supervising doctor if there was a longer needle, and pulled a new one out to try again.
She tried twice more with the longer needle—and was still unsuccessful. She just kept moving the needle around in my belly, but not actually penetrating my uterus in order to get the sample. The whole time her attending doctor was standing there watching and didn’t step in to help or offer suggestions.
I was starting to freak out, so I asked if we could take a break so I could calm down and breathe. Once the needle was out and I was able to relax my body for a minute, I worked up the courage to ask the attending doctor “Is it rude if I ask you to try it?” She said she would be glad to, and was able to get the sample successfully on the first try.
The attending doctor had a totally different technique. She had the ultrasound tech hold the ultrasound wand for her and used one hand to press down firmly on my belly, which compressed the distance the needle needed to travel through the padding of fat and other tissue to reach my uterus. I immediately wondered why she hadn’t offered that advice to the fellow.
When the needle reached my uterus, she jabbed it pretty forcefully. Maybe that’s how she always does the procedure or it’s simply what’s necessary to get through the uterine wall, but I can’t help but wonder if she was employing more force than necessary after watching the fellow’s three failed attempts.
When it was over, I was just happy to be finished. After they left the room I cried and let out the pent-up stress I had been holding back, running my fingers over the four small puncture wounds on my belly.
The Heartbreaking News
Two days later, the genetic counselor whom we met over Zoom called while I was in my office at work. I recognized the number on my phone immediately, quickly closed my door and answered.
“Hi, is this Summer?”
“Yes, hi.”
“Summer, I have the results of your amniocentesis and everything came back fine.”
Finally. The reassurance I had been so desperately seeking was here. The baby was totally healthy. Nothing wrong at all.
I broke down crying and was so overwhelmed with relief. She also asked if I wanted to know the sex. I said absolutely and I was thrilled to find out that it was a boy. I was over the moon. A healthy baby boy. A little brother for my daughter.
After weeks of worry, everything was fine. I hung up and called my husband. We were both so excited, especially about the boy because we already had a daughter. I called his parents, then my parents and then texted my friends, to tell them the news.
Sadly, that joy was short-lived. I started feeling feverish and had stomach cramps later that afternoon. I decided to call my OB/GYN who said it was all normal as long as my fever didn’t go above 100.6 (it was currently 99.6). Around 10 p.m. I started leaking a small amount of fluid and my fever reached that 100.6 benchmark. I called the hospital and spoke to a nurse I’d never met who ultimately said that, because I was only 16 weeks, they wouldn’t take me in labor and delivery. All they could do in the ER was listen for a heartbeat. She recommended going to my provider in the morning.
Throughout the night I started leaking more and more fluid to the point where I had to get a towel to lay down in the bed. An hour later, I stood up and water spilled down my leg onto the floor. By 3:00 a.m. I was also bleeding. At that point, I knew what was happening.
I called my provider first thing in the morning to find they’d clearly not been notified about my situation—plus, the earliest they could see me was 2:20 p.m. that afternoon. This was Thursday, 10/21/21, which I now refer to as my son’s “birthday”— though obviously it wasn’t the birth I was hoping for.
Saying Goodbye
We took our daughter to school and came back home together to wait. I was still cramping a lot and leaking so much, but tried to stay strong. My husband, who’s a photographer, suggested we take maternity photos. I loved the idea, so we went to one of our favorite spots and took what have become some of our most treasured “family” photos, before heading to the appointment.
That afternoon ultrasound confirmed what we already knew: my water had broken. It was both devastating and comforting to hear that, at that moment, our sweet baby boy still had a heartbeat, meaning he had been with us during the photoshoot the hour before. Still, a baby can’t be born at 16 weeks. The pregnancy was no longer viable.
My doctor explained that I could go to the hospital and be induced if I wanted to give birth to him and perhaps be able to hold him briefly, which I couldn’t fathom doing. Instead, I opted for a dilation and extraction procedure, which was scheduled for later that afternoon.
It was such a strange experience. Checking into the hospital with no bags, getting undressed and into a hospital bed, knowing I was going to be walking out again in a few hours without a baby. Without our son.
They let my husband go back with me to the “pre-op” area where they started my IV. Everyone was very kind while I was laying there and they were getting everything ready. The next thing I remember is waking up in the recovery room—I don’t remember even being in the OR. It wasn’t painful. I just woke up and I wasn’t pregnant anymore.
We did ask for our son’s remains so he could be cremated. I remember going into the funeral home a day or so later, and bringing our daughter with us. At just 18 months,, she was oblivious, toddling around the funeral director’s office playing with brochures. We had to meet with them to discuss what we wanted, which was basically nothing: no service, no urn, etc. “Just the ashes please.” They didn’t charge us anything, which I remember thinking was very kind.
They called a few days later to let us know the ashes were ready to be picked up. I left work a little early to swing by the funeral home, just like I was running any other errand. “Have to pick up groceries and my son’s ashes before I get my daughter from daycare,” I thought.
I was not prepared for this experience. Sitting in the car alone with that black box that just said “Baby Boy Boone” was when the grief really hit me. I sat in the driver’s seat of my car with his ashes in the passenger seat and just broke down. I cried and screamed and wailed the way I had when my mother died over a decade ago. I sobbed over how sorry I was that I wasn’t able to protect him. I screamed at how unfair it was that he had died. I choked and spluttered and coughed in rage.
Eventually I collected myself enough to pick up my daughter—just like any other day. I was still a mother to another baby and I had responsibilities, even in the depths of my grief.
Looking Back, Moving Forward
The bag of ashes was ultimately very small, so we took it out of the big black plastic box it came in and put it in the small little pot with a lid my husband made in our local pottery studio. It sits on our mantel today between two dollhouse rocking chairs that were the toppers to our wedding cake. A representation of the son we lost sitting between his parents who love him dearly.
Looking back, I obviously have so many regrets. I wish I had asked the attending doctor to do the procedure first instead of letting the fellow try it. Since this experience, I have gotten stronger in advocating for myself in medical environments, and I am much more comfortable asking questions and pushing back when I’m nervous.
I wish I had felt like I had more time to make a decision rather than being under a 20-week deadline for an abortion in North Carolina. If I had known, with certainty, that I could still choose to end the pregnancy to prevent my child from suffering later on, perhaps I would have waited until the 20-week ultrasound and seen that everything looked fine.
I wish the wording of the genetic testing report had said something simple and less ominous like “We didn’t get enough of your baby’s blood to test and we recommend a redraw. Please make a follow up appointment for more information.” Then I could have heard the details about the high-risk results during a conversation with a provider who could explain everything clearly with context about how they came to those statistics.
I’m sorry that my daughter won’t get to grow up with her brother. I’m angry that my husband won’t get to raise his son. I am sad that I won’t get to be a “boy mom.” And while the sorrow, anger and sadness have dulled in the years since my son’s fateful “birthday,” I’ll always miss him. I’ll always see children born around his due date and be reminded that he would be their age. I’ll always love Opals because they are his October birthstone.
I wish a lot of things had been different. Ultimately, I wish our sweet boy had had the chance to live and grow up in our family. But I also know that I made the best decisions I could with the information and resources I had at the time. And I supposed that’s all anyone can do.
