There is nothing more silent than an ultrasound exam room when the technician is looking at a sick baby.
This is my third pregnancy; and I am 12 weeks pregnant, so I expect the idle chatter and jokes about jelly and the wiggling baby inside me. The ultrasound technician does not ask us what format we want our ultrasound DVD in ― Mac or PC.
After the technician is done, the doctor reviews the scans. He delivers the news. I think about how it must feel to deliver this news. To watch faces and tears and hopes fall and spill all over the exam room floor. He informs us that our baby has an 80 percent chance of having a chromosomal abnormality. We are directed to meet with genetic counselor in a dark office at the back of their practice, where we are walked through the upcoming testing and diagnostic procedures available to us. She spares us having to go back into the waiting room with the other expectant (and happy) parents, showing us out the back door.
I cry quietly on the drive home. Once there, I Google all of the different genetic disorders that our baby could be suffering from ― Trisomy 13, Trisomy 18, Trisomy 21 (Down Syndrome), Turner Syndrome ― and become fluent in the associated outcomes.
We return to the doctor soon after for invasive testing ― a big needle plunged deep into my abdomen to capture some of the baby’s cells and solve this tortured mystery.
The genetic counselor calls with our initial results. I break down sobbing. She doesn’t acknowledge it, and neither do I.
We learn our baby girl has non-mosaic Turner Syndrome ― meaning she has only one X chromosome in all of her cells where there should be two. There are a broad range outcomes for these girls if they are born. Most women miscarry with no clue their daughter was afflicted (or perhaps was even a daughter). Some girls who are born show no signs of having the condition and only find out they have Turner Syndrome later in life when they themselves have trouble conceiving.
My husband and I agree that as long as this little girl gives us reason to hold hope, we will continue the pregnancy. Perhaps this was putting too much on our unborn daughter, but we want to temper our hope and take our cues from her. We name her Clementine, knowing “Tiny” would be a suitable nickname.
We face weeks and weeks of worry, while waiting for more answers.
“I do my weeping and worrying late at night and in the shower. In the car on my commute to work. In the bathroom with the door locked when my fears become too much.”
I log onto online forums for girls with Turner Syndrome. I stare at their smiling faces and click through pictures of meetups and marches. I visit online boards that described how some parents terminated their pregnancies simply because of the diagnosis and others because the baby was dying in utero.
And I go to work and care for my two older kids because bills and life and curling up and weeping and worrying aren’t sustainable for a family of four relying on dual incomes.
So I do my weeping and worrying late at night and in the shower. In the car on my commute to work. In the bathroom with the door locked when my fears become too much.
To understand her odds of survival, we schedule a fetal echocardiogram at 16 weeks to see how Clementine’s heart is developing.
On the way to the hospital, traffic slows on the congested off-ramp. I silently spot a shiny black crow hopping along the freeway median.
I drink too much fluid before the procedure and urgently have to pee before the exam. I head to the bathroom ― the pressure on my bladder is too much to bear. Afterward, I pound water in the clinic elevator to try and refill my bladder before the exam. They have to postpone the exam. I am failing this baby before she is even born.
The exam starts. It is very quiet. The room has an ocean theme with whales and dolphins and goldfish and a turtle. Everyone is terribly nice. They move us to a new room with better equipment. This one has a jungle theme with monkeys and a cheetah.
We did not expect the idle chatter of a normal ultrasound and none materializes. It is dark and silent in the room, and my husband stares at the ultrasound monitor like it is the Super Bowl ― it is his only real time with her, and he isn’t going to miss a moment. He memorizes her. I look and look away. I see her there so real and alive and squirmy ― begging her to give us hope but not believing.
The nurse gives us the all clear that the exam is over, and I run to the restroom. I am grateful I don’t have to hear whatever news is coming with a bursting bladder. The doctor comes in and scans the baby. The doctor apologizes for talking in medical terms that I do not understand. The doctor says:
the heart is moot at this point
lungs are collapsing
severe edema
After 20 minutes or so, the doctor says “unfortunately, I’ve seen enough.” The doctor scans the room for a box of tissues, spots it and tells the ultrasound nurse she can leave with a nod. He turns to us and begins talking, but I only catch pieces:
fluid under the skin
around and in the lungs
lungs unable to develop
kidney issues
one ventricle is much smaller
I don’t know what your religious beliefs are
advise you to terminate
And, finally, “nothing good can come from continuing this pregnancy.”
He adds that it is his job as a pediatrician to recommend we end our baby’s suffering.
“We are broken and sad, but we love our baby too much to watch her slowly die; and as unthinkable as it is to make this heart-wrenching decision, we are grateful we have the choice, financial means and possibility to do so.”
We sit silently weeping in the darkened exam room after he leaves and slowly pull ourselves together. We take the elevator down to the blue 7th floor of the parking garage. We pay for parking and head home.
Our decision to terminate the pregnancy doesn’t even feel like a decision. We are broken and sad, but we love our baby too much to watch her slowly die; and as unthinkable as it is to make this heart-wrenching decision, we are grateful we have the choice, financial means and possibility to do so.
Three days later, I have sushi and a beer.
Four days later, I have laminaria inserted into my cervix to open and expand it. Five days later, at 17 weeks pregnant, I have an abortion.
I change into the hospital gown and sign the papers authorizing the death of my baby.
I try not to weep (I weep as I write this) and clutch the E.E. Cummings poem I carefully copied on a piece of paper for my baby girl ― “I carry your heart…”
It is a pathetic, sweaty, crumpled piece of paper ― like a renegade, high school note. The nurse throws it in the trash when I set it down to get my IV ― my sweet, pale, sad, husband fishes it out of the biohazard trash can.
My husband and I sit in some weird side room with kid-size chairs waiting to be called for the procedure. The doctor comes in, and I hand her my crumpled poem, “Can you put this with her?”
The nurse comes and tells me, “It’s time.”
I say goodbye to my husband and walk down the hall into the room. I lay down on the table and silently cry.
The anesthesiologist says, “Here comes a big glass of wine,” and I go to sleep.
***
Two days later, my milk is coming in.
I miss the person I was before my baby died.
I am proud of my strength, but I am completely broken inside.
Nobody gets it ― nobody.
And still, I am thankful that I had the option and ability to do this ― that I am the one suffering now so that she did not have to.
I am telling you my story, because this is what happened and because it could happen to another woman just like me ― or nothing like me.
I am telling you this story because it matters.