• Tia

Part 1: I stopped referring to her as the child I lost. She is the child that led me to live!

Updated: Mar 3, 2020

March is Trisomy 18 awareness month. I am dedicating this weeks posts to our daughter Gianna Lianne, who was born with Trisomy 18 in 2009. Another name for Trisomy 18 is Edward's syndrome. It's considered a rare genetic condition, where the developing fetus has a 3rd, 18th chromosome. For those unfamiliar, similarly, those with Down syndrome have a 3rd, 21st chromosome, however trisomy 18 is considered much more fatal based on the extra chromosome location. The lower the chromosome number the more terminal the condition. Here is my story.


I have to set the pages up a bit, so bare with me as I take you briefly back. I was a single mom of 1 for 10 years before my husband and I got married in 2007. My husband was, and still is an active duty service member in the military. Soon after we were married, he got new duty orders to VA, which meant for us, we were moving again. This time it was from CA to VA, but he was also going to have to almost immediately deploy from VA on a Naval Carrier across the world to the area of Iraq for 9 months. So, I moved back home to CT to be close to family while he was deployed. In June 2008, he returned to VA and we were so excited to settle into our new "honeymooners" life. I was planning to immediately move to VA with him as soon as we settled on a house. We were both ready to add to our family and during one of those early weekend visits I got pregnant, pretty much immediately! I had not even moved to VA yet. He was looking for a house for us and now timing was everything, because we were having a baby. I was ecstatic! He was ecstatic! I think I took a pregnancy test everyday for the entire first trimester or close to it. I know, super extra, but that's how surprised and excited we were. I dreamed of the day I would be a mom again. My husband had never even held a baby, but he desperately wanted to be a dad.

Around 6 weeks, I remember seeing bright red blood when I used the bathroom and immediately told my mom. My first thought was that I was miscarrying. My mom assured me this wasn't the beginning of something terrible, to keep an eye on it and go from there. The bleeding stopped the same day. The first 2 trimesters were pretty easy. I started my OB care in CT since we still hadn't secured a home in VA. My husband was still living on the Navy ship he was assigned too in the meantime, and Jasmyn and I were staying with my mom. There was a lot going on, but life was good and going in the direction of my dreams. My OB was a very well respected doctor who I had prior to moving to CA and so it was only natural for me to resume my care with him. Dr. Kenneth Rhee. I say his name because he is such a huge part of this journey. I have an immense amount of love and respect for this man and always will. Not only is he an amazing physician, but a gentle and kind human with unparalleled bedside manner who genuinely cares for his patients. At this point in my pregnancy Dr. Rhee sent me for all the typical labs, testing and usual OB stuff. I felt special getting all the new mom gift bags and coupons. Our first ultrasound went fantastic. A heartbeat was confirmed and my apprehension from that early day of bleeding fled like a bird going south for the winter. All of my bloodwork came back perfect. We were thrilled to hear the due date of 3/3/2009. Due dates are always such a fun milestone, they give everyone something to look forward too. I was literally on cloud 9 from June through October. At the end of October, we had our gender scan and low and behold IT'S A GIRL!!! We picked out her name almost immediately tossing between Ava and Gianna. We chose Gianna.


***Please note, by continuing to read there may be unintentional triggers for some***


It gets a little fuzzy going forward because so much began to take place so fast. I received a call from Dr. Rhee that I would need to have another ultrasound performed. He was referring me to another hospital because our gender scan ultrasound report showed fluid filled cysts on the baby's skull. These cysts (medically termed Choroid Plexus Cysts or CPC) were benign, and while not "normal" they were usually just and innocent finding that would go away and be nothing, but they were also considered "soft" markers for certain chromosomal abnormalities. I wasn't super nervous given the odds, and the fact that all of my labs had been great encouraged my positivity. This finding however, put me on a biweekly ultrasound routine, to monitor the cysts. I'm pretty sure it was within the next 2 ultrasounds that things began to get wishy washy as they say. One ultrasound would say the CPC's were gone, great news right? Ehh not fast, now the concern was that the baby wasn't growing at a rate they like to see. This slow or low growth rate is called Intrauterine Growth Restriction (IUGR). Again, not super concerned. Since my first daughter had a different biological father, they thought perhaps I was just going to have a smaller baby this time. IUGR alone, is definitely something to watch but in and of itself does not necessarily mean anything. The CPC's were also gone now and there were no birth defects visible that would indicate something worse. The defects they were looking for included cleft lip/palate, major limb malformations, kidney defects or heart defects just to name a few. Due to the IUGR I was then ordered for weekly ultrasounds. We were well into November by this point and I was having some cramps every now and again. Ultrasound news remained pretty much the same with the IUGR. There was some growth but I think we were hovering somewhere under the15th percentile. I was then ordered and given a Biophysical profile, otherwise known as a non-stress test, which basically monitors accelerations and de-accelerations of the baby's heart rate as well as any contractions. This is a non-invasive procedure where you are only hooked up to fetal monitor belts. It's purpose overall is to gauge fetal well-being. Again, passing score.

Gianna was a warrior before we knew just how much of a warrior she would become. She was always moving and wriggling in my belly. She responded to my voice and to my pleas and prayers as time would go on, and time would go on. Time would go at the speed of light much of the time, and then there would be days, and days still that would feel like time just stops.

To be continued.....


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