Everyone has a Purpose

Today a colleague told me “everyone has a purpose.”  Not the “everything happens for a reason,” which I’ve gotten so many times before.   Both comments are made with such good intentions, but hers really hit home.  We are all put on this earth with some purpose.  She has shared life changing moments with people.  Moments that might not have come to pass if she weren’t there.  I’ve had those moments.  As a midwife,  I have those moments almost daily.  I am the first hands that greet a child on her way into the world.  I have made women feel welcome and listened to. I have let women cry about the baby they know if going to die.  I have cried with women about the baby that died for no good reason.  I have helped women feel comfortable with their bodies and in control.  And this is just my work life.  I do volunteer work on the side.  I am a good friend.  I have had many purposes and have many more.  This baby has a purpose too.

There are some things I just can’t think of a reason for.  Why do children die?  Why do some people who work so hard still struggle?  Why do some women who would make such great moms, face infertility? Why do I, who consciously planned this pregnancy- took my folic acid, timed my ovulation, wished and hoped for a baby- have a difficult diagnosis.  While others who don’t even want to be pregnant have a baby without any issues?

I’m learning not to compare- everyone has their own struggles and I’m not sure I’d trade mine for theirs.  But my own struggle is not happening “for a reason.”  It makes me feel like somehow I deserved this.  Tell me, what is the reason if my baby ends up with open heart surgery?  What is the reason if I lose my baby- tomorrow or in sixth months?  There is no good reason to make children suffer.  Or parents suffer for that matter.

Whenever I heard, “everything happens for a reason,” I would cringe on the inside.  I tried to respect the good intentions behind the statement, and so respond in some benign way.  Now I think I’ll respond- “I’m not sure if everything happens for a reason- some reasons are unknowable.  But I like to think everyone has a purpose.”

Loss

As a midwife, I spend half my time working with gynecological patients- doing pap smears, checking for STDs and infections and prescribing birth control.  The other half of my job I am working with pregnant women during their prenatal appointments and catching their babies.  I’d say 95% of my job is happy.  I help people- curing their infections, attending births.  But there is a darker side.  People think of midwives catching babies all the time, being an integral part of a memorable and joyful time in a family’s life.  We also help them through hard times.

Stillbirth.  The word I fear most in obstetrics.  Miscarriage is heartbreaking. I’ve cried with patients when they miscarry in the first trimester.  Stillbirth has no words.

For some clarity, pregnancy loss is classified depending on gestational age.  Miscarriage is used during the first and second trimester.  Sometimes second trimester loss is referred to as late miscarriage or mid-trimester loss.  Once the fetus is viable, or can theoretically survive outside the womb, traditionally 24 week (though arguably as early as 20 weeks these days), loss is called stillbirth.

Stillbirth is uncommon.  Happens in less than 1% of pregnancies.  But the effect is so huge, that those of us in the field can’t help but worry about it for our patients. There are several factor that can increase the risk- age of 40, morbid obesity, history of stillbirth, uncontrolled diabetes, clotting disorders and chromosomal abnormalities, to name a few.

So here I am, with a prenatal diagnosis of Down Syndrome and a risk for loss.  It was the reason I opted for testing- wanting to know my risk (more concerned about trisomy 18, where the risk is 50%).  It was the first question I asked the genetic counselor after the diagnosis- what is the risk of loss?  The numbers I have are 20% in the second trimester and 12% in the third.  These are general numbers- they aren’t broken down by week or by other conditions babies with Down Syndrome face, like growth restriction and major birth defects.

I feel like everyday I am facing my worst fear.

In the beginning, my sadness was palpable.  I would cry frequently. I worried about telling people I was pregnant.  I borrowed a doptone from a friend to check for a heartbeat.  I didn’t want any baby stuff like ultrasound pictures or early baby gifts around, in case I lost the baby and then would be reminded.

I know I have no control over the risk, but a part of me thinks if I can just let the universe know I am so happy to pregnant and I will love this child, maybe I’ll get to meet him or her.  If I’m good to the universe, it’ll be good to me.  I’m hesitant to complain about the pregnancy because I’m afraid somehow karma will come and take it all away.

There is no easy way to handle this fear.  Stay optimistic. Just don’t think about it. Meditate. Distract.  There’s nothing that takes the fear away completely.  It’s a little easier now that I’ve had ultrasounds with good news, now that I look a little pregnant and now that I feel movement.  It makes it more real.  I can’t pretend I’m not pregnant- I have to accept it and pretend everything will be fine!  If I act that way, sometimes I begin to think that way.  And it’s a lot more enjoyable being pregnant, surrounded by pregnant women, to think everything will be fine.

The Karate Carrot

My husband Chris gets weekly pregnancy updates from a pregnancy website.  Tells him what’s going on with the baby and pregnancy each week.  At week 21, the email said the baby was as big as a carrot and practicing karate.  And so came our newest nickname for baby- the Karate Carrot.

The Karate Carrot started living up to its name.  I’ve been feeling what I think is a lot of movement for 22 weeks.  I know some women are just feeling first movements at this time.  And then at 22 weeks and 2 days, with some focus and patience, Chris felt the Karate Carrot kick!

Movement has been a a huge landmark for me.  I think I consciously felt movement just shy of 18 weeks.  Patients often ask me what does it feel like or when will they feel?  Ive told them usually somewhere between 18-24 weeks and it feels like flutters or gas even- which is what people had told me. One friend even said it felt like worms. But for me it started off more like jabs or mini-kicks.  And once it started, I felt everyday.  Mostly at night, when I concentrated while lying down.  Now I’m 23 and half weeks and I feel on and off all day long.  If I’m feeling down, I can take a moment and wait for movement, which makes me feels better.  It means he/she is there and all this work and waiting is for something.

The ultrasounds…

13 weeks:  Increased nuchal translucency and enlarged bladder.

15 weeks:  bladder still enlarged

18 weeks:  bilateral clubbed feet, but otherwise all normal.  Ureters dilated but with normal kidneys and now normal bladder, not a huge concern at this time

20 weeks:  followup anatomy (couldn’t see the hands previously)- normal hands.  One foot looked “less clubbed” but still clubbed

22 weeks- normal fetal echo! Clubbed feet

Next up: checking growth and re-evaluating anatomy in 5 weeks.

I feel like I’ve gotten through the hard ultrasounds!  The level II (18 weeks) was nerve-racking.  But seeing mostly normal anatomy, I felt my first sense of relief.  Clubbed feet were minor compared to my other worries.  And having a normal level II meant that the fetal echo might be normal too.  Each ultrasound I was eagerly awaiting and worrying over.  Time passed slowly.  But after that normal anatomy scan, I could see the future- at least a little.

And then the normal fetal echo! I was mentally preparing myself for a baby that needed open heart surgery.  So now I’m adjusting to the fact that heart surgery is unlikely.  What a nice adjustment to be making!

I still worry about bowel issues, about growth, about loss.  But I think I’m ultimately feeling optimistic!  Baby is passing tests so far! Go baby!

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.

First trimester…the early worries

In the beginning, I was nervous.   I didn’t want people to know I was trying.  I didn’t want people to know I was trying and not pregnant.  And when I got pregnant, I didn’t want anyone to know right away.  I was very private.  I was nervous.  I’ve seen enough miscarriages to make me justifiably nervous.  I saw one woman after an ultrasound that showed she miscarried at 7 weeks and she asked me tearfully how she was going to tell her 6 year old.  I was not going to be her.  I just had to get to 13 weeks and then I could tell the world.  Or 15 weeks.  Or when the baby was born.

When I had my first ultrasound and it showed an empty sac, I was devastated. There should have been a heartbeat.  There should have been a blob.  There should have been something.  All my excitement vanished.  I planned a D&C for the following week, with an ultrasound beforehand, just to be sure.  And so I went to work and held back tears as I listened to women complain about their pregnancies and felt a strong connection to those women who wanted to be pregnant and to those who were miscarrying.  I was nauseous and sad and felt like I couldn’t tell anyone. I was mourning the pregnancy I thought I would have.  Worried I would have trouble conceiving again.    Worried I’d never be a mom.  Worried I’d be spending my days with pregnant women but never be pregnant myself.

A week later, we could see a heartbeat! I was over the moon! I could rejoin the world of the happy and hopeful again.  But that worry never fully left. We told our families at 12 weeks- but asked everyone to hold off on sharing the news until we had our 13 week ultrasound (our first trimester screen)- just to make sure everything was fine and to officially get me out of the first trimester.  After telling my parents, I remember saying it still felt early to tell.  I was still nervous.  I’m a worrier by nature, so it felt natural to be nervous.  In retrospect my sister tells me it was my maternal instinct kicking in early.  Little did I know I would learn about whole new level of worry.

To Give and To Get

As a midwife pregnant with a child with Down Syndrome, I am privileged to have both given and received a Down Syndrome diagnosis.

I remember her birth story- it was her first, they were teachers.  She was 36weeks, just a hair shy of term and the baby came fast.  They had declined testing.  After the baby was born into my hands I lay her right up on her mother’s belly, skin to skin, to cheers and tears of delight from her parents.  As the nurse dried the baby off on mom’s belly, she looked at me whispering something.  It took a few beats for me to realize she was saying that the baby looked like “a downs baby.”  Since baby was fine, she stayed on mom for a bit, as the family oohed and aahed over her.  Whose eyes she had, which family chin she inherited.  She was beautiful and the parents loved her unconditionally.  And then we called the pediatricians to check her out- mostly under the guise that she was technically preterm.  I don’t think either of us felt qualified to inform the parents of our suspicion.  The pediatricians did an exam and one came over and started going over the baby’s features.  I remember her stammering and I think she mentioned Down Syndrome somewhere in her talking. It was awkward.  After they left, I sat down with the mom, who just looked confused, in shock.  I had a feeling she didn’t absorb any of it.  She needed more.  I told her in simple words without the medical jargon of single palmar creases and flattened nasal bridge, that they think her baby has Down Syndrome.  She was a little unbelieving at the time- but she heard it.  I remember I was positive- we still talked about who she looked like and how fine she was.  Dad was more immediately accepting of the diagnosis.  Baby had to go to the nursery for a sugar check because mom had gestational diabetes, so dad went with her.  When he came back, I caught him in the hallway.  Mom had had a lot of attention, but dad had been whisked away during those moments- so I stopped him and asked him how he was doing.  He said “So she has Down Syndrome- but she’s still our baby.”  He was just so loving and immediately accepting.

Now that I have been given the same diagnosis, I think I know what went through that mom’s mind in those first moments.  My diagnosis went from “there’s a 1/3 chance of some sort of major birth defect or chromosomal abnormality” based on the first trimester screen to “it’s Down Syndrome” based on the CVS results.  I had a weekend to think about all the possible outcomes- mostly I focused on trisomy 18 (my biggest fear) and Down Syndrome.  I didn’t think this baby was chromosomally normal (is that even the right term?).  I had seen too many results from those first trimester screens to know 1:3 does not bode well.  In a way I was hoping for Down Syndrome, because my baby had a better chance of living.  So when my midwife called my Monday afternoon in the middle of my work day and she said “It’s Down Syndrome,”  I actually was relieved.  I didn’t cry.  I said “ok….ok… Ok.  I can do this.”  My midwife was great.  She was nonjudgmental. She knew me.  We had talked for a long time after the abnormal first trimester screen. So she knew my thoughts and fears about all the possible diagnoses.  She asked what I wanted to do.   I told her I wanted to continue on- my husband and I had talked about it- which at the time was all theoretical, but in my new reality, continuing on was my first instinct.   She went on to talk about all the positive things I would experience.  “Babies with Down Syndrome are born without malice.” I would still experience all the joys of pregnancy.

In comparing my experience with my patient’s, I feel lucky.  I have so much more time to adjust.  I am grieving.  I am seeking information.  I am angry.  I am worried.   But I get to do this on my own time.  When I finally get to meet this baby, I can welcome him/her without feelings of loss.  The birth will be nothing but celebration.  I can’t imagine having to process all this and adjust to a newborn all at the same time.  My tradeoff is the worry I feel through the pregnancy.  I would have had a much more carefree pregnancy if I chose not to do testing.  But my birth will be even more joyful than I could ever have imagined.

I have had the pleasure of attending my patient’s third birth as well as her first.  She chose not to do testing during the pregnancy.  And she was nervous- in a way I thought I understood before, but really understand now.  She just wanted to meet this baby and make sure she was ok.  She wasn’t in full blown labor, but I admitted her and broke her bag of water to get things going.  I could see the relief on her face, when she knew I was going to help her meet her baby that day.  And it was wonderful.  Baby joined us after a fast labor and was just fine.  Her relief holding her in her arms and knowing she was ok, was immense.  I look forward to that feeling with my baby.

I’m writing because…

I’m writing for me- Telling my story as a therapeutic outlet.  As a memoir.  As reflection. As a way to work through my feelings.  I’m writing for my family and friends- to keep them updated about health issues and baby’s well being.  I’m writing for others.  Getting a prenatal diagnosis of Down Syndrome and opting to continue the pregnancy is not the norm. Most people especially with invasive testing, like a CVS or amnio, choose to terminate based on a diagnosis of Down Syndrome.  I am writing to join the small community of us who take that diagnosis and embrace it, to contribute my story so others can feel connected, like I feel connected hearing about how others cope and adjust.