top of page

Part 4: I stopped referring to her as the child I lost. She is the child that led me to live!

**This post may be triggering for some, I tried to be gentle and short with my words but feel the need to note this still**

Monday, December 8, 2008. It started as a fairly normal morning. I got Jasmyn off to school, my mom had left for work and the hustle of Monday morning was starting to wind down. I was getting used to "resting" instead of riding the wave of rush hour traffic to work. I remember I had on a rose pink, soft cotton, long sleeve maternity shirt that morning. I remember setting up the cherry wood table tray in my mother's living room, turning on morning television and beginning to eat a bowl of cereal. I remember the phone ringing and the caller ID saying "Kenneth Rhee MD". I remember his voice on the other end after I said "Hello", and I remember knowing it was bad before he said anything simply because it was he, himself who was calling. I remember his voice being gentle so it didn't crack and him confirming that our baby did infect have a genetic condition called Trisomy 18. He gave me a minute. The silence was deafening as my mind tried to wrap around the words I just heard. I got some composure and heard Dr. Rhee say, ever so gently, "I am so sorry". I hung up the phone and sobbed uncontrollably. Trisomy 18 had been vaguely mentioned here and there, enough for me to have googled it but not enough for me to know much else than what google reported. We all know google will terrify you if you search about having a hangnail, so my comprehension of Trisomy 18 at this point was dire to say the least. I called my mom and my 3 sisters immediately. I was screaming into the phone "My baby is going to die and I'm never going to know her!" There are no words to explain this type of fear, to this kind of news. Devastation is an enormous understatement yet nothing else even comes close to that word either. Shocked is how I felt though, and shock is real. I sat on my mother's couch as she flew in the door from racing home to be by my side. She wept. This had become in many ways, her journey too. My sister's trickled in 1 by 1 and we all just sat there in my mother's living room and cried. I think in moments like these, in the unmistakable silence when words are unfound because they have yet to be discovered is when you realize that humans are really not superheroes. There wasn't a single person in the entire world that could change the news I heard or the presumable outcome. There wasn't anyone who could make it all better, not my mother, not my sisters, not my husband and not me. I was this precious baby's mommy and I could not change this diagnosis, or the future no matter how hard I tried or desired too. I did not have the capability to see in front of me, let alone make anything better for her. This is when faith is tested to the max. This is when you start to believe in God even if you never did, because nothing and no-one else can help. This is also when you question God's plan and even have moments of hate because how could a loving God "do" such a terrible thing. A baby is such a blessing, but this diagnosis was turning life at the moment into a curse. The next several weeks I was pretty much a zombie full of every and any emotion. I had moments of extreme faith and peace, but many moments of extreme fear and angst. I told my husband about the diagnosis and he was of course, devastated and confused. I didn't blame him. I felt the same. The ship was in port more around this time so he was able to come to CT more often for appointments and visits. I was approaching near 30 weeks by now. We were referred to a genetic counselor almost immediately after receiving the diagnosis. Her role was to go over the diagnosis with us and explain the how and why of it all, and to discuss options with us pertaining to the pregnancy going forward. I do recall us taking a seat in her open but cluttered office. She was an older woman, maybe in her 50's. She began very matter-of-fact, asking us what we knew about Trisomy 18 and her role in explaining to us the accurate facts about the condition. She felt us out a bit regarding our spiritual beliefs and didn't take much time to start with her schpiel. She made sure to report all the scientific statistics about Trisomy 18 and all the possible physical as well as internal birth defects. I can't lie, everything she said was terrifying. It all sounded so scary and tragic.. Even though we did not have what she called a typical case, (our was late diagnosis, minimal/no suggestive findings until after the amniocentesis confirmed the diagnosis) she assured us that the outcome would be no different than those that were typical. The outcome likely being that the baby would pass away in utero, or would be born and survive minutes at best. She highly recommended and boldly encouraged us to terminate the pregnancy reiterating over and over that the baby would have "no quality of life". If I had a dime for every time I would hear that phrase during this journey, I'd be hanging out with the likes of Bill Gates and Oprah. Not kidding. She could read our body language and the natural sway of our heads going from side to side as if to say no, without having a second thought and then she pressed on. She made us feel as though if we chose not to terminate the pregnancy that we were being selfish and that it would also be invaluable and almost cruel to the baby. She used words like "suffer" and phrases such as "incompatible with life". She then went on and handed me a pamphlet about late term abortions. She said due to how far along I was in my pregnancy that if I chose this option, which again was highly recommended as the best choice for everyone, that I would have to fly to Utah for a legal abortion. She explained the procedure which would include a medically induced abortion, where they would put potassium in the baby's heart to stop it, in utero, and then I would deliver the baby naturally but as a still birth. I don't remember much else (and I'm not sure there even was much else) except telling her that we would absolutely not be doing the "recommended" procedure. My husband and I didn't even exchange words to know we were on the same page with this. This was not an option for us at all, especially at this point in the pregnancy. I knew deep inside that science only goes so far, and then, there is God. Those words would become a mantra for me, especially then, and even until this day in many situations. I knew there was life in me, moving, wriggling, kicking and defying the odds already. Who was I to decide when this life would live no more? I wasn't! We left that office in under 20 minutes and I never looked back.

****I want to take this time to express my genuine love and understanding to anyone who has been through this in any way and chose differently. I know how difficult this type of decision can be period. I also know how the medical community (from our experience) can view a Trisomy18 diagnosis. There are so many emotions going on that swirl around all the questions when there are just not enough answers, even still. You just do not know, what you do not know. We all had to trust our providers and rely on what the medical community was telling us along with our own personal intuition and/or faith. I do not judge anyone, in anyway for the decision they made for their family based on the information they had on their journeys. This is not a stance for pro-life or pro-choice, it is simply our story based on our personal experience and where we were at that time. I respect each and every family who has taken this journey with no choice, and I respect each of their decisions as well. ****

bottom of page