One year ago today

“It’s Down Syndrome.”
I heard the voice say on the other end of the phone. Her voice had a soft melody to it, with the sentence ending on a slightly lower note than the beginning.  I had been waiting anxiously, eagerly, for this phone call since I had the CVS three days before.  I spent the weekend researching all I could regarding increased nuchal translucency and enlarged bladder.  Most of what I read terrified me. In all that I found, aside of the obvious desire for normal results, I hoped it was Down Syndrome.  The other likely scenarios were Trisomy 18, which would have brought a harder choice or megacystis, where the baby would die.  At that point in my pregnancy, I could not imagine carrying a baby to term that I knew would not survive.  Down Syndrome was livable, not what I had pictured, but totally livable.
“Ok. Ok.” I said, exhaling, trying to calm my racing heart. “That’s ok.  It’s not Trisomy 18.  My baby can live.”
“Do you know what you want to do?” my midwife asked in a non-judgmental way.
“I want to continue.  I need to talk about it with Chris, but we discussed the scenario, and I think we’re ok.”
“Do you want to come in right now and talk?” she asked.
“No. it’s ok.  I have three more patients to see anyways.  It’s ok.”  I was surprisingly calm, no tears.  We said our good-byes after she told me I could stop by afterhours if I needed to.
As soon as I got off the phone, I called Chris and told him the news.  At first I heard what I thought was disappointment in his voice, but realized later it was simply surprise.  Based on the nuchal translucency, we were given a 70% chance that the baby would be chromosomally normal. In his world, those are pretty good odds.  In mine, I knew what those numbers really meant. We agreed to talk more when I got home. I then went and saw my next few patients all while keeping it together as this huge life changing news rattled my head.  Little did I know that this would be practice for what was to come.
One year ago today I learned that the baby I was carrying had Down Syndrome.  I took the news in stride.  Tears came later when I thought good and hard about how my life would change, but I didn’t doubt my ability to raise my child with love regardless of her diagnosis.  Over the next few months I prepared myself.  I read memoirs of those raising babies with Down Syndrome.  We met with a special needs lawyer to get our finances in order and prepare for the future of our child. We attended our state conference for Down Syndrome, learning about the local services, preparing for potty training and meeting parents of children with Down Syndrome.  We found a pediatrician that was very familiar with Down Syndrome, researched day cares accustomed to Birth to Three and started collecting names of good therapists.  We embraced the diagnosis.
Perhaps you can understand the enormity of my loss. Sometimes I feel like I have to justify my grief- yes, I’m sad even though she had Down Syndrome.  Yes, I’m sad even though she would have been very ill.  Yes, I’m sad even though we were told she might die.  I know I don’t have to justify my grief to most of you; you are all so kind.  I think I’m simply processing the special injustice of saying yes to so much and not being even given the chance to parent this baby beyond the NICU.
What injustices do you mull over in your mind?

The screams I swallow in the patient rooms

“Answered many questions” is often a code phrase we use in charting.  Some patients simply have an abundance of questions needing answers.  It can often be in stark contrast to ones who don’t ask any.  We always answer their questions, though sometimes we might suggest saving some for a future visit if we are running out of time.  A detailed conversation about pain relief options for labor is better had in the third trimester, so when a patient asks about epidurals at their second prenatal visit, I’ll often give an abbreviated answer, so that we can focus on more appropriate topics for the stage of pregnancy that they are in.  When I see our code phrase in someone’s notes, I enter the room prepared to be more directive in our chitchat, so I don’t run late and thus respecting my other patient’s time as well.

A few minutes into our visit I wish someone had written the code phrase, so I would have been better prepared.  The hard part with her questions was that they didn’t really have an answer.  She just needed to talk about her anxieties.  I am someone who understands anxiety, so I am usually quite understanding when a patient needs to talk things out.  I think I may have lost this sense of understanding when Mabel died.

After entertaining her questions about multiple physical complaints, reassuring her that all she felt was normal, she launched into her concern about the First Trimester Screen, a basic screening test for Down Syndrome and Trisomy 18.  She was scheduled for later in the week and was nervous because she knew someone who had it and the doctors had told her they thought the baby had Down Syndrome.  The expectant mom chose a CVS and then had to wait two weeks for the results.  The baby didn’t have Down Syndrome, but those two weeks of waiting and worry were just awful!  She couldn’t imagine having to do that! She was so nervous about going for the screen because she didn’t want to have to deal with a false positive, like that.   She was so anxious, how awful.

“If you knew your baby was going to have Down Syndrome, would you terminate the pregnancy?”

“No.”

“Then don’t do the test. It’s optional.  If it’s going to cause you more stress and the results wouldn’t affect your thoughts on your pregnancy, maybe your shouldn’t do it.”

Usually I’m having the reverse conversation with patients.  When women decline the test I have to confirm with they that they truly understand what they are declining.  Many women feel that they are low risk (no family history “young”- less that 35) and so are declining because they essentially think they are invincible.  I have to confirm with them that knowing they had a baby with Down Syndrome or Trisomy 18 wouldn’t change their thoughts- they would continue the pregnancy regardless.   The last thing we want as providers is for someone who declined testing because they didn’t truly understand what they were declining, to end up with a baby with one of those trisomies and wish they has made another choice.  It’s not my job as a provider to make them feel bad about their decision- I soley want them to understand them fully and embrace them.

“But I want the ultrasound!” she said when I suggested the test seemed to be causing her too much stress.  She continued on about how anxious she was.

That was it.  I couldn’t take it anymore.  I wanted to take her by the shoulders and shake her, screaming,  “I know!  I know EXACTLY how it feels to be told your baby might have Down Syndrome and have to wait for the CVS results!  I KNOW! And you know what?  That’s not the worst.  The worst is living with the fear of miscarriage and stillbirth after you get the positive results.  The worst is to accept those results and welcome that baby only to be told months later that the baby would likely die.  The worst is to live out the rest of the pregnancy afraid to bond with the baby, unsure how to respond when people congratulate you and to cancel your baby shower because you don’t know how to celebrate the baby.  The worst is not being able to keep her inside you longer, where you know it is safe and she can breathe.  The worst is hearing the doctor say she is going to die. The worst is seeing her face vent free for the first time in her moments of death.  The worst is holding her lifeless body and then giving it to the nurse never to hold her again. THAT is something to worry about.”

But I don’t say any of those things.  I swallow those screams and let them sit there in my belly, churning in sadness, anger and annoyance.

“Well, this is one of those hard choices you make when you become a mother.” I say curtly and end the conversation.  I reach for the doptone to listen for her baby’s heart rate, signaling to her I am not going to talk anymore about it.

The complicated lives of others

It was the weekend I was waiting to learn the results of my CVS.  That weekend I had two baby “sprinkles” to attend.  Small little gatherings to celebrate pregnant friends who were having their second or third child.  A smaller form of a baby shower.  No one knew I was pregnant, let alone pregnant with a potentially complicated baby.  One of the sprinkles was for a colleague- they had been told I was “out sick” the day I had my CVS, so I let them know the truth.  It was an easy conversation with them, all midwives, because I didn’t have to explain that a 1/3 chance of something being “wrong” was not a good chance.  They all knew what those numbers meant.  They all knew what stillbirth, trisomies and birth defects meant to a midwife.

The second sprinkle was for a friend.  I thought it was going to be me, her and another friend.  When I showed up, they told me two more were coming.  I took that moment, before the others came, to tell them I was pregnant.  Before I could get the words out about my situation, they were squealing and hugging me.  I had to tell them glumly, thank you but it might not turn out ok.  I explained about the abnormal testing and how I was waiting for the results.  They understood.  And shortly after, the two others arrived.  The first was a friend of the sprinkle recipient, who I knew and she is very nice.  But I wasn’t expecting her to walk in big and pregnant too.  I might have known, but I had certainly forgotten.  It knocked the wind out me.  And the final guest was someone I hadn’t met and she walked in with a relatively new baby.  The one other person there without kids, my friend who I had just told about my circumstances, leaned over and whispered to me “is this a nightmare for you?”  Yes. I was glad to have her there.  She got it.

I spent much of the brunch sprinkle talking to that friend, letting the other three women talk about families and babies.  But there was one point when the women with the baby in her arms started talking, almost tearfully, about how hard it was having two kids so close together, how she wished she had waited a little longer before having another.  I couldn’t take it.  I thought about me who would love to have just one baby in my arms, let alone two.  I thought about people who struggle with infertility.  I finally piped up and said, trying to put as polite and positive spin on it as possible, “At least you have two kids.  I know my sister wishes she could have another child close in age to her daughter but it hasn’t happened yet.”  I threw my sister out there instead of me thinking I might come across less snotty.  I don’t remember her response, but she did quickly get up to go to the bathroom.  I’m pretty sure she went there to cry.  I had such mixed feelings about it.  I definitely felt bad I made her cry.  She probably had postpartum depression.  I even apologized to the guest of honor, saying I think I made your friend cry and I’m sorry about that.  But I couldn’t apologize to this new mom.  I stood by my statement.  Everyone has her own battles, but a little perspective might be nice.  We don’t know the complicated lives of those we are talking to.  I could have had five miscarriages.  I could have lost a baby.  I could have no partner and be wishing for one so I could start a family.

My words might be truer than I even know.  This woman could have a very complicated life.  She could have a troubled home life.  She could have a parent dying of cancer.  She could be bankrupt.  I don’t know.  But at the time I just wanted to scream, look at all the good you have!

Some could say the same for me- be happy with what you have.  Yes, I have a loving partner, a good job, stable finances, supportive family and kind friends.  I have the ability to get pregnant and the experience of pregnancy.  I have the hope that I might get pregnant in the future.  These are things I am grateful for everyday.  But I have also buried a child-my only child.  All these wonderful things will not bring my baby back.  They can not fill the hole in my life that was meant for Mabel.  I want that woman to know that I was saying those words worried about the fate of my unborn baby.  I want her know that my worries came true.  I want her to know I still think about that day.  I want her to know that I might have seemed mean and insensitive, but it was for a reason.  I want her to know I said those words while thinking of the 1 in 3 chance than my baby would have a trisomy, have a major birth defect or die.  I want her to know that I had a baby and she died.  I want her to know I held a baby in my arms too, but I held mine as she took her last breaths.  I guess I just want her to know my complicated life.

The first clues…

I was 12 weeks and 6 days.  Had my first trimester screen ultrasound- more as a formality than anything else.  I knew we were testing for risks of Down Syndrome and other trisomies.  I was mostly worried about the other trisomies and the risk of stillbirth associated with them, though I was still technically “young” and had no risk factors.  This would be my last marker of the first trimester- it was going to tell me everything was fine, so I could be a little more open about the pregnancy.  Tell work. Tell friends.  I had told my family earlier that week, because I was lucky enough to see them almost all together- rare since they live in California and Massachusetts.

The sonographer was having trouble getting a good image of the neck fold- the nuchal translucency.  I have since learned that often is code for “something’s wrong.” And they bring in the doctor.  You would think I would know that, being in the field, but I was happily oblivious looking at my moving baby who finally looked like an actual baby.  The doctor told us they were concerned because the nuchal translucency was thick.  I asked what my numbers were- I had bloodwork done ahead of time so they could calculate the numerical risk. The measurement was so thick, it was off the charts- a whole new set of numbers was given to me.  1/5- chance of chromosomal abnormality, 1/10- chance of normal chromosomes but other major birth defect.  3%- chance of stillbirth/loss even if everything else is normal.  Do the math and that’s a 1/3 chance of something. I’m used to seeing 1/200 as an abnormal result, so to me, 1/3 meant something was going on.

Our options for further testing were blood test with 99% accuracy. Or CVS with essentially 100%.   Blood test takes 1 week. CVS takes as little as 2 days for preliminary results.  Blood test is accurate for trisomy 21 and 18, less accurate for trisomy 13.  CVS can test for other genetic issues, like Noonan’s syndrome or SMA, if chromosomes were normal.  I never thought I’d opt for invasive testing. But I also never thought I’d have abnormal testing.  We opted for certainty.  I’m a need to know kind of person and my husband thinks the more info the better.  And the 1/3 chance seemed a lot higher to me than the 1/400 chance of miscarriage.

We did the CVS the next morning.  I had to take the day off work- which meant I had to announce to a few important work people that I was pregnant and that I had pretty abnormal testing.  Not the way I had envisioned announcing my pregnancy.  I arrived with a full bladder, as instructed.  I asked the sonographer if anyone ever peed on the exam table- because I follow directions well and filled that bladder to the brim.  She said no one had yet- which made me think I was going to be the first!  She also had me empty my bladder after one look at it under ultrasound.  It took 3 attempts to get it down to size.  I apparently have an amazing bladder! The CVS hurt.  They numb the skin- so I don’t feel the needle go into the belly, but when that needle hits the uterus- ouch! It took less than a minute, but I knew the whole time it was in my womb.  I was trying not to breath so I wouldn’t move, so the needle would stay exactly where it needed to be.

I was instructed to take it easy over the weekend.  I bailed on the triathalon I had signed up for the next day.  I went to watch and cheer, thinking the whole time about the hole in my uterus- willing it to heal.  I said “stay baby stay” over and over again silently in my head. I sat on the couch and waited for Monday and my future to come.