Londyn’s story

A few months back, My Husband and I found out we are expecting our 2nd child together (3rd, including my son from a previous relationship ). Pregnancy has been relatively easy-going, with mild nausea, fatigue, food versions, and cravings. On November 23rd, we got official confirmation of those two pink lines; the baby was approx. 6w3d with a beating heart of 115bpm. The following month went by, and my 2nd appointment was on December 21st; the baby was doing fantastic with a heartbeat that I finally got to hear 💗 reading 167bpm. At this time, my doctor offered to schedule in 2 weeks the NT scan and genetic blood test that tests for the three most common chromosome abnormalities. Without hesitation, I knew I wanted the ultrasound to see the baby again, so I scheduled this appointment. The day finally came for my 12-week scan, and 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 and then got all the measurements she needed. One thing that stood out, and I would soon find out why, was she kept measuring and then moving away from the back of the baby's neck (Nuchal Translucency, this 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 90miles away because the fluid at the baby's neck measured far higher than what is considered normal. My appointment was scheduled for 4days later and those four days were spent scouring the internet only to come across more horror stories than I could imagine; granted, 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, basically going a little more in-depth than the last one. The doctor came in 30minutes 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 that the fluid at the neck had grown from approx. 5.75mm to nearly 9mm in just 4.5 days, and we were told that this is known as a Cystic Hygroma. The baby also has a large amount of fluid in the abdomen, extending down the back, under the lungs, and multiple areas of fluid in 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 1/2 of those born will survive more than a few hours. Hydrops its self 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 has the chance of survival will drop to 1-2% Due to this pregnancy being in poor condition with a high likelihood of a miscarriage occurring in the upcoming weeks, 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 babys genetic makeup to know what is causing the hydrops. In the meantime of 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 so is slim unless a congenital heart condition is 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 (yes 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 in the morning on 2/5/22 and just 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 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 4hrs waiting for them to call in an ultrasound tech. As soon as she started I knew my momma instincts were confirmed. After 30min or so 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 then came in to offer condolences and I was sent home to check in with my OB for delivery arrangements. On Monday the 7th 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 5min apart shortly before the 3rd dose was to be given at 7:30. Our precious daughter was born at 8:50pm all natural at 17w1d gestation. She was absolutely beautiful and showed so many of her brothers facial features. We spent time holding her and taking in all the feelings, but 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 30min 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 20weeks there is no requirement to report her birth or passing.