decision

There are impossible decisions. Our guest post today is about one of those decisions. Clementine is Janet's third child. As she says, "Of all the decisions I would have loved to make for her, what diapers or preschool or prom dress, I only got to make one decision, the hardest of my life." Her writing beautifully blends her heart and her heartbreak. As she said, "When you pray for your child's life, when you prostrate yourself before God and the universe and Buddha and Allah and all that is fair or deserved and the answer is 'no,' there is a fundamental change in every cell in your body in the fiber of your being; in your heart, head and soul. Nothing is sacred, nothing is fair, nothing is true except that everything ends." Janet and her family will be celebrating Clementine's first birthday in July. We are so grateful for Janet sharing her story with us today. —Angie

Here is the truth:
my milk is coming in
I miss the person I was before my baby died
I know her brother and sister would have been crazy happy over her and they would have been such friends and occasionally, such enemies and such fabulous partners in crime
I am proud of my strength
(I am completely broken)
nobody gets it
nobody

Sweet baby girl,
I wish I could have kissed your chubby cheeks
And zerbertted your plump belly
and nuzzled you neck
and gobbled your toes
and given you all this love

I am proud to have made the easiest hardest choice
(but) that does (not) ease this pain
They say I suffer so you did not have to
I haven't made up my mind on that one yet...

I am so fucking sad.

+++

Here is what happened.

The ultrasound tech shoots warm jelly on my tummy and starts the scan. I notice what seems like a large nuchal translucency (NT) - the space behind your baby’s neck - and ask if that is what she is looking at, she says "Yes." She says nothing else.

The ultrasound technician does not ask us what format we want our ultrasound DVD in - mac or PC. We will later learn we need to sign a medical release form to ever get them – this is only the case for sick babies – with healthy ones, they hand out ultrasound photos like candy. There is waiting and more tests for us.  

Days later, the genetic counselor to solemnly tell us our baby has something (Trisomy 13 or 18, Down Syndrome, Turner Syndrome, spina bifida, etc).

I break down sobbing.  She doesn't acknowledge it and neither do I. We schedule more tests.

On the way to the hospital, traffic slows for the congested off ramp. I silently spot a shiny black crow hopping along the freeway median.

I drink too much fluid before hand and urgently have pee before the exam. I head to the bathroom – the pressure on my bladder is too much to bear. I pound water in the elevator and waiting room to try to make up for it. They have to postpone the exam while my bladder refills - my first parental failure.

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.  The tech is very kind about how full my bladder is and compliments my tolerance but lets me know I have to wait for the doctor to review the film before I can use the restroom.

The nurse gives us the all clear 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 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.   The doctor hands me said box of tissues and says:

I don't know what your religious beliefs are
advise you to terminate
nothing good can come from continuing this pregnancy
fluid under the skin
around and in the lungs
collapsed lungs – unable to develop
kidney issues
one ventricle is much smaller

He tells us it is his job as a pediatrician to recommend we end our baby's suffering.

We sit silently weeping in the darkened exam room after he leaves and slowly pull ourselves together. We take the elevator down the blue 7th floor of the parking garage.  We pay for parking and head home. We will never be the same.

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.

We head to the new doctor’s office the day before for the laminaria insertion. My doctor does not do this procedure. And my insurance does not cover it. We are paying out of pocket.  I read the papers that say once the laminaria is inserted, the uterus is open to infection so there is no turning back and the abortion must take place. They give a Xanax and a big ibuprofen and a small envelope of Xanax to help me through the coming days.

The doctor walks in, smiles and says “Sucks to be pregnant, huh?”

I tell her I am thrilled to be pregnant, but devastated my baby is sick.  Awkward silence. She likes my glasses.

The laminaria does not hurt nearly as much as I thought it would and the Xanax makes me feel calmer than I have since our first ultrasound.

I take the Xanax they gave me the day before. My doctor does not recognize me in the elevator and tells another elevator passenger to be careful of my pregnant belly. There are no words for this moment.

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 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 scary medical trash.

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?"

Nurse comes and “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 nurse proclaims how rare and “awesome” it is to have an all female team [I will later wish I said “the baby inside me is a girl too,"] but I am silent and slew by their enthusiasm.  I start to shake with sobs. Grief. The doctor holds my hand in her papery one.

The anesthesiologist says “Here comes a big glass of wine,” and I go to sleep.

Did you know your baby would not survive? Do you wish you did? Alternatively, do you wish you did not know your baby’s diagnosis? Since your child's or children's death, have you wrestled with any decisions you made during or about your pregnancy?