Monday, January 7. A day I wish I could erase, but that morning is burned in my brain. Your Daddy had just seen you for the first time and I had finally gotten to see you on an ultrasound machine that wasn’t from the dark ages. We had just fallen even more in love with you being able to see you so clearly on the screen. I kept trying to peak between your legs to see if you were a boy or a girl, even though I knew at only 12 weeks gestation that was unlikely to be determined. Your older brother had a very obvious penis at that age, so I couldn’t help but look. We were over the moon excited, but that feeling was short lived.
After what seemed like a very short scan from what I could remember with your older brothers, the sonographer said we were done and told me I may use the restroom (the joy of ultrasounds where they want your bladder to be full). I assumed all was fine, but when I returned from the restroom, my heart started pounding when the doctor came in and asked me to lie down. She was going to do a scan and I knew that wasn’t good.
She began casually talking about your anatomy. “Do you see the white? That’s where the skeleton is. The dark area is fluid and soft tissue.” We nodded along. “See the space here between the back of the neck and the spine? That’s what we call a nuchal translucency and this baby’s is alarmingly thick. We like it to be less than 2mm and your baby’s is measuring at 5.5mm.”
My heart stopped.
“What does that mean?” I asked.
“Your baby most likely has a chromosomal abnormally and the size of this NT measurement indicates that this baby likely will have many other problems. I recommend you do what’s called Chorionic Villus Sampling (CVS) where we insert a needle through your abdomen to take some sample cells from the placenta. That will give us a definitive diagnosis.”
I felt like I wasn’t even on earth hearing this news. This wasn’t happening. I began to sob.
I asked her if she ever sees cases like this end up being fine. I was still holding out hope that you were developing perfectly.
“No. Especially with the severity of this NT measurement, I’m certain there is something wrong and there will most likely be other issues, but the CVS test will be able to tell us with certainty.”
The doctor we were speaking with is one of the high risk OB’s at UC Davis Medical Center. She spoke very matter of fact. There didn’t seem to be a lot of compassion in her tone, but I could tell she had decades of experience. She was seasoned and knew her stuff.
Your father and I didn’t know what to do. With tears flowing down our faces, I asked for five minutes to think. We decided that the CVS test was what we had to do if we wanted answers.
They scheduled us for later that day; we only had to wait for about an hour.
They took us to meet with a genetic counselor, Elyse. I barely remember that conversation. She spouted off percentages and statistics about you. My mind was in a fog. I learned the word Trisomy. She rattled off statistics about Trisomy 21, Trisomy 18, and some others. I learned that most fetuses with chromosomal abnormalities naturally miscarry or are terminated. I learned that most Downs Syndrome babies have numerous other health problems. She began to paint a very real picture of what a chromosomal abnormality means for a human being – and not through the rose-colored lens of the media, featuring only the very best-case scenarios; the rarest of rare cases. She asked us what we would do if the test comes up positive; carry to term or terminate. Without any hesitation, I said we would keep you. She made a note. I’m assuming she’s required to ask us that.
After some time of processing, we were escorted to an exam room where the CVS test was performed. I got lucky because of where your placenta was located; they were able to take a sample through my cervix rather than a needle through my abdomen. I texted my girlfriends and joked that this was the only good news I would hear that day. I was already trying to make light of the situation with you – I guess that’s what I do when I’m in survival mode.
As we left, I felt like my heart weighed 900 lbs. We had to go home and wait for results, but we both knew the likely outcome. We both knew our lives were going to change forever. We both knew we loved you regardless.
After three days of excessive Googling, I learned about cases where a baby had a thick NT measurement, but no other problems. I was desperately trying to find something to give me hope. However, by day three I had a sinking feeling that wasn’t the case for you. My intuition was preparing me for bad news.
Thursday afternoon, January 10 at approximately 1:30 p.m. I got a phone call from a no-caller ID. I knew that was the genetic counselor calling with results for you. I had just put your brother Preston down for a nap. I answered my phone. She asked if it was an ok time to talk – her tone immediately gave away that this wasn’t good news. Your big brother Porter yelled from the bathroom that he wants help wiping his butt. That is motherhood in a nutshell when you have more than one kid. I’m on the phone waiting to hear devastating news, but having to tell the genetic counselor to hold on one moment because I’m wiping the butt of a five year old, who knows how to wipe his own butt.
Your brothers were both in bed. I told Elyse to go ahead with the results.
“Every sample cell has tested positive for Trisomy 21, Downs Syndrome.”
Once again I felt like this can’t be real. My heart was heavy, but I went into autopilot. I began taking notes like I was on a conference call, writing down everything she said.
She explained that given my age of 34, I had a 1/350-ish chance of this happening and there’s no way for them to know if the extra chromosome is from the sperm or the egg. I asked her if you were a boy or a girl. “He’s a boy,” she answered.
It’s crazy when I think about how only a few months ago I was obsessively trying to control your gender – something that I now find to be disgusting. Like i’m disgusted with myself for caring about your gender when all that really matters is for you to be healthy. I feel so much shame about that. I don’t care what you are, I just want you to be healthy.
Elyse asked again if we were going to keep you. I said we were. She told me she’d let my OB know.
After I got off the phone, I was in shock. I called your father and told him the news. We cried on the phone together. We were so devastated for you. This wasn’t what we wanted for you.
After about an hour, I got a call from my OB who I love dearly. Hearing her familiar voice immediately made me start crying. Hearing her voice felt like a calm wave in the midst of this raging hurricane. After so many days of unfamiliar territory and talking doctors that I have zero history with, hearing from her felt comforting even in this shitty circumstance.
She started talking to me about the other findings from the ultrasound, not just the Downs Syndrome diagnosis. She explained what fetal adema/hydrops is and what it means for prognosis. She explained the massive cystic hygroma on your neck, and how finding this size of one at this early stage does not give this baby a positive outlook. I then realized the purpose of her call. No one had really explained everything to me on a macro level. She wanted me to see the whole picture. She was the one that had to tell me that you probably wouldn’t even make it to your due date.
She explained that with the combination of the other markers and the severity of your Nuchal Translucency measurement being in the 99th percentile, your particular case wouldn’t likely make it to term and if it did, you would be one of the worst case scenarios on the Downs Syndrome spectrum and you would have a lot of life threatening health problems immediately following birth if you made it that far, which wasn’t likely. There is a close association with the severity of the NT measurement predicting the severity of the Downs Syndrome cases. The 99th percentile NT is also closely associated with congenital heart disease, something that can’t be confirmed until 20 weeks gestation.
She asked me again if I’ve thought about whether I want to continue this pregnancy, because I’ll most likely lose you before I’m 20 weeks. This is the first moment where I had a second thought about whether I should try to carry you to term. Did I want to let you slowly die inside of me or did I want to stop you from developing. I began to process that I have the most impossible decision to make. It began to sink in that I will probably never meet you and that feeling was like having my heart ripped out of my chest and blown to smithereens.
After reading academic study after academic study, seeing pictures of dead fetuses with cystic hygroma’s and hydrops, talking it through with your dad, praying with your dad, we made a decision on Saturday night, January 12 that we were going to spare you the suffering of developing any further. At 13 weeks, you weren’t likely feeling any pain yet. We made the impossible choice to bear the burden of making this decision for you because we felt it’s the best way to protect you from pain.
After almost 14 weeks of carrying you, I had a D&C on Friday, January 18 and we said goodbye to you. UC Davis Medical Center gave us the option to have a blessing said for you after you were born, which we of course opted to do even though I wasn’t conscious for it.
Words cannot describe the devastation I feel. I am mourning you so deeply my dear sweet son. You are so loved. My heart is broken. I never got to hold you or kiss you or tell you I love you and I’m so sorry for that. I will forever have a place for you in my heart as one of my children. You will ALWAYS be remembered. You will ALWAYS be loved. We all feel like we missed out not having a chance at a life with you. I will tell you how much I love you when I join you in heaven one day. I hope that one day you will be able to feel the unconditional love I have for you.
My heart is broken, but it’s filled with love for you my baby boy.