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Our Daughter Exists Only in Our Memory

Photo Credit: Amanda Loecker

My husband and I recently found out we were expecting our second child together (my third—my son from a previous relationship.)

My pregnancy had been relatively easy, with mild nausea, fatigue, food aversions, and cravings.

On November 23, we got the official confirmation—the baby was approximately 6w3d, with a beating heart of 115bpm.

The following month went by, and my second appointment was on December 21. The baby was doing fantastic with a heartbeat that I finally got to hear, reading 167bpm. At this time, my doctor offered to schedule the NT scan and genetic blood test that looks for the three most common chromosome abnormalities.

Without hesitation, I knew I wanted the ultrasound so I could see the baby again, and I scheduled this appointment.

The day finally came for my 12-week scan. I was excited to see the baby and hopefully listen to the heartbeat again. As the tech got started, she immediately zoomed in and showed me that baby's heart was beating away at approximately 154bpm. She then got all the measurements she needed. One thing that stood out—and I would soon find out why—was that she kept measuring and then moving away from the back of the baby's neck (Nuchal Translucency, which is the primary measurement they are looking for at this scan.)

After completing the scan, the doctor came in and I immediately knew something wasn't right. My doctor brought up the images and measurements of the baby's neck repeatedly and then finally, after what seemed like forever, said that she needed to refer me to an MFM high-risk doctor 90 miles away because the fluid at the baby's neck measured far higher than what is considered normal.

My appointment was scheduled for four days later and those four days were spent scouring the internet, only to come across more horror stories than I could imagine. Though, there was a fair number of success stories out there too.

Finally, after what felt like an eternity, we set off to my appointment, where I was given a level 2 ultrasound, which basically went a little more in-depth than the last one. The doctor came in 30 minutes later to go over the findings, which turned out to be far worse than just some extra fluid at the baby's neck.

We discovered the fluid at the neck had grown from approximately 5.75mm to nearly 9mm in just 4.5 days. We were told that this is known as a Cystic Hygroma. The baby also had a large amount of fluid in the abdomen, extending down the back, under the lungs, and in multiple areas of the brain. The official name for the excess fluid is known as Hydrops Fetalis. Only 20% of cases diagnosed as early as we were make it to birth and if we do make it that far, only half of those born will survive more than a few hours.

Hydrops itself has a 1:6000 chance of occurring in any pregnancy. We were told that the most common cause of the cystic hygroma along with hydrops is the chromosome condition known as Turners Syndrome. If this is what our baby had, the chance of survival would drop to 1-2%. Due to the condition of the pregnancy and the high likelihood of miscarriage, we were given the option to have a CVS (chronic villus sampling—tissue extracted from the placenta) done to get a better idea of the baby's genetic makeup. And to know what is causing the hydrops.

While waiting for the CVS results, we received the screening results from the original genetic blood test. These came back positive with a 1:6 chance of the baby having Down Syndrome. However, the likelihood of this being the case was slim unless a congenital heart condition was causing the hydrops.

After what felt like an eternity we finally received the results from the CVS test. It was confirmed that our baby girl (we found out gender at this time as well) did in fact have Trisomy 21. We were so relieved that she had this instead of what the doctors initially thought (Turners Syndrome), and finally felt we could relax a bit while we prepared for how we would manage her care once she was born.

We unfortunately only got 5 more days with her as I awoke early on the morning on February 5, 2022 and felt very off. Once the rest of my family awoke and I got them all situated for the day, I told my husband that I needed to go to the ER and have the baby checked. Once I arrived they checked all my vitals and said that because I was not bleeding or cramping that I just needed to go home and contact my OB on the following Monday.

I refused to leave and spent the next four hours waiting for them to call in an ultrasound tech.

As soon as she started I knew my momma instincts were confirmed. After about 30 minutes, I finally asked and she said “I am so sorry.” She then packed her stuff up and left. The doctor and a handful of other staff came in to offer condolences, and I was sent home to check in with my OB for delivery arrangements.

On Monday, February 7, I checked into labor and delivery around noon. The first dose of Cytotec was placed at 1:30pm and then a second dose around 4:30pm. My contractions picked up in intensity and were about 5 minutes apart shortly before the third dose was to be given at 7:30.

Our precious daughter was born at 8:50pm after an all natural labor, at 17w1d gestation. She was absolutely beautiful and showed so many of her brother's facial features. We spent time holding her and taking in all the feelings. Because of her having the cystic hygroma and hydrops, I had a hard time looking at her knowing that I didn’t want to remember her that way.

After about 30 minutes, I had the nurse take her and spent the remainder of the next few hours in and out of it. The hardest part of leaving that hospital was knowing that our daughter only truly exists in our memory. Due to being under 20 weeks, there is no requirement to report her birth or passing.

Thank you Amanda Loecker for sharing your story. Shared with permission.

Pregnancy and infant loss can leave grieving parents feeling isolated and unsure how to navigate the heartbreaking circumstance of living without their precious baby. Unexpecting delicately helps grieving parents navigate the complexities and heartache of life after loss.

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