She’ll remember

Some patients are difficult. Some take a long time. When I saw on my schedule that I had a patient coming in who “needs extra time” and had an extra slot blocked off for her, my stomach dropped a bit- it would make for a long afternoon. Until I read the name of the patient and realized who it was. Yes, she needed extra time. Yes, it could be difficult to care for her. But she was so pleasant- a pleasure actually.

Her chart labeled her simply as “learning disabled.” I have been taking care of her for years, having inherited her when her previous midwife left our practice.   My guess is she is on the autism spectrum somewhere, though I am not a psychiatric provider. She also has some compulsions, leaving the house wearing no less than ten layers of clothes. The extra time needed for her was merely so she could dress and undress.

She spoke in in a loud monotone voice, but was friendly. She complimented me, and just about everyone else she interacted with, on at least several pieces of clothing I was wearing.

“That’s a nice sweater and necklace and shoes and hairstyle. Your hair is so long. It wasn’t that long before.”

“No I think it’s the longest I’ve ever had it.”

She has an astoundingly accurate memory- for people and dates especially. She could tell me the exact date of each of her mammograms over the past year. She quoted from a letter she received from her previous midwife informing her of the death of a mutual friend of theirs.

“I didn’t see you last year. I saw Margaret. You were on maternity leave,” she started. I could see where this was going. “Did you have a boy or a girl?”

“A girl,” I answered with a smile. Isn’t it nice when people ask about our babies?

“That’s nice. When was she born?”

“February 15.”

“Oh, the day after Valentine’s day. That’s nice.”

And then the visit somehow went one. I asked my typical calcium intake and exercise questions. We discussed her weight. I asked how retirement was. And all the while I thought about her amazing memory. I would have told her the truth if she asked the right question, but it didn’t come up. I felt like she would ask about my baby in years to come, because she would remember. So at the end of the visit I said to her,

“I have to tell you something. You asked about my baby earlier. Well, I wanted you to know that she died shortly after birth.”

“Oh, that’s so sad,” she said without hesitating. “What happened?”

“Well, she her lungs were too small and she couldn’t breathe.”

“Why were her lungs small?”

“So she had some birth defects, because she had Down Syndrome. Sometimes babies with Down Syndrome had issues like hers.”

“I know some people with Down Syndrome. That’s sad about your baby.”

“Thank you. And thank you for asking about her.”

I wanted her to know, because she’ll remember. She’ll remember Mabel for years and years.

Is there someone you know that will remember your baby always?

Some people were raised well

She was a young woman. Some people do well at the gyn and for other’s it’s a struggle everytime to make it through the door. I had one patient tell me she’d rather come to me for a pap smear than go to the dentist (so true! Me too! Pelvics take 2 minutes, the dentists takes an hour!). Another patient tells me each time that she cant understand how I can do what I do. It all grosses her out.

This nervous young woman said in the middle of her visit- the visit that was focused on her and her issue and her nervousness around the exam- “I just want you to know I’m so sorry about your baby.”

In all her nerves and angst, she could take a minute a look outside herself and say something kind. That’s amazing.

I smiled. Thanked her. Thanked her for saying something.

It’s young women like these that make me want to hunt down their mothers and just say “Good job. You raised her well.”

Snippets  

“How’s the baby?” she asked all smiles.  The joy in my office was palpable- she was there with her sister, as her support person for her first OB visit.  They both remembered me from her last pregnancy and clearly remembered that I had been pregnant myself not too long ago.  And now they wanted to bring me in and share the joy with them.  How sweet of them to ask; it actually pained me a little to give the truth.  “Oh, my baby died.”  Shock.  Disbelief. Discomfort.  “Oh no, I’m so sorry,” they say, with brows furrowed unknowing what more to do.  “She was sick.  We knew she was sick.”  That made it better somehow.  Sympathetic “oh”s followed making it easier to transition back to the visit at hand.  I did not cry or break down.  I was just mesmerized at how I felt that I had to make them feel better about my baby’s death.  I practically said, “It’s ok that she died because she was sick.”

____

We were talking of her plans for labor.  “I’m pretty easy going,” she said. “I don’t care if I end up with an epidural or not, a c-section or not, as long as she’s healthy.  I just want a healthy baby, you know?  As long a she’s healthy.”

I don’t know.  I have NO idea what it’s like to simply want a health baby.  It’s not all that matters.  Each time she said healthy, the word stabbed me in the chest.  Of course every one wants a healthy baby.  But now I feel like there’s some sort of ignorance, or even greed to that wish.  Like playing a scratch card- everyone wants  to win $1million, but I’d be happy for $1, as long as I could take that dollar home.

I cut her off with a quick “ Yup.  You’re next appointment is in one week.” And I left the room, exposing my pain with some unintelligible mumbling of certain cuss words under my breath.

___

I walked into the exam room and I could see the exasperation already on her face.  Young and annoyed to simply be pregnant, she glared at me as if it were all my fault.  I have faced this look before.  Many women are uncomfortable at the end of pregnancy.  They want to know when they’ll be able to sleep again, to be rid of bad heartburn, to shed their newly acquired cankles.  We spend their whole pregnancy talking about one date- their due date.  I explain in the first visit how it’s an estimated due date, give or take two weeks, but that lesson is long forgotten by the time that magic day rolls around.  They are done; they just want to meet the darn kid already, not realizing they are about to trade one set of difficulties for another.

I used to be more sympathetic.  Now as I looked at this young woman giving me a sour face and I want to shake her and scream You don’t know how good you have it!  I don’t smile at her, trying to be her sympathetic ally.  No coddling about understanding how tough it is to be so pregnant.  Gone are the words I use to sweetly remind her how nature works and time will bring her a baby.  Instead I talk robotically about the protocols for induction leaving emotion and compassion crumpled in a heap in the corner of the room.

_____

“Man, labor hurt like H-E- double hockey sticks!”  Her actual use of that phrase almost made me laugh.  Her baby was a few years old, but she still remembered.  “Do you have kids?”

I had a daughter.

“Oh, “ her voice dropped and her face took on an appropriate somberness. “Is that you in the sign?”  I nodded.  “I was reading it in the waiting room.  I’m so sorry for your loss.  She was beautiful.”

I smiled “She was, thank you.  And thank you for reading about her.”  And with just the right amount of pause I add, “ and yeah, labor did hurt like H-E-double hockey sticks.”  No derailment; we are back on the path

______

If a patient declines genetic testing it is our practice in my group to make sure we document that they wouldn’t terminate for those reasons.

“If you knew you had a baby with Down Syndrome or Trisomy 18, would you consider terminating the pregnancy?”  I hear them say no and write the words in their charts.  Over and over I say these words- several times a day.  How can I not think of Mabel?

 

The Gyn experience

Caring for women in my job involves talking about fertility and reproduction- past, present and future.  I’m seeing prenatal patients and though that’s hard in its own way (I can’t bring myself to ask if they are having a boy or a girl, what the baby’s name is- as I used to do in a gushing, excited way), gyn patients still have their own obstacles.

“He’s the kind of baby you don’t show a teenager,”  she said of her one year old.   She meant that he’s so well behaved, such a delight, it might inspire a teen to think having a baby is easy.  I delivered that one year old and so she excitedly showed me photos.  “Let me show you the cutest kid you’ve ever seen!”  I tucked my head behind the curtain to purell my hands and literally grimaced.  I didn’t want to see her baby.  I just wanted to do the pap smear and call it a day.  But that’s not how it works.  Of course she has every right to show off her child, especially to me who was the first to welcome him into this world.  Fake it til you make it.  I hate that mantra, I think only because I have to do it so much these days.  I hate not being genuine- I’m not even that good at it.  I took a quick breath and smiled as she showed me his chubby cheeks and blond hair.

How do I look at these babies and quell the inner voice in my head?  Mabel had blond hair.  Mabel had chubby cheeks.  I never got to see Mabel smile.  Mabel will never be one year old.

Another gyn patient asked general questions about fertility.  Life doesn’t always turn out how one expects it.  Long term relationships end.  Some women find themselves single when they thought they’d be starting families.  I sympathized with her, my heart really aching that she’s not where she wanted to be.  But her attitude was good; she was able to talk realistically, with a smile even, about how some friends are having babies while others are talking of freezing eggs.  I was impressed, thinking that I need to learn her perspective- frustrated, hopeful, realistic.  I wanted to say, “yes, I totally get it!  You think and hope your life will turn out one way and then suddenly you’re in your mid thirties and life is not at all what you pictured!” We may have very different circumstances, but we share that same thought.  I simply affirmed what she said and hoped she could see the true understanding in my eyes.

Puppies & Rainbows vs Doom & Gloom

I arrived at work and my first patient was early, already in an exam room waiting for me.  I put down my things and quickly went to see her. Afterwards I took a minute and reviewed my schedule for the rest of the day- something I usually do first thing, but I didn’t want to keep my patient waiting.  I saw that my next patient was coming in for a procedure.  Our new scheduling system told me only that and I was curious what procedure, so I opened the chart and discovered I’d be inserting an IUD (intrauterine device- a form of long acting birth control).  I also saw that she was eight weeks postpartum.  By the time I figured this out, I had already seen her walk past my office, toting a baby carrier, following my assistant.

I can do this, I thought.  Compartmentalize.

Even when I ask to see gyns only, some of my gyns are pregnant.  Even when I ask to see no postpartum, some of my patients are postpartum.  It’s the nature of our business; there is a lot of overlap.

I saw the patient, did my initial spiel of risks/benefits.  I had to leave the room to look something up before getting started on the procedure and while I sat at my desk for that minute, I burst into tears.  I had just sat across from this woman, living the life I was supposed to live, her eight-week baby making noises just feet from me.  She was the me that I was not, the me I wanted to be, the me with the take home baby.  It took all my energy to stay focused on the woman and not look at the baby.  I did not coo.  I was not cheery.  I probably appeared annoyed and grumpy to the patient.   Little did she know…

But how am I supposed to be when I was faced with a newborn before I was ready to be?  And to have to act professionally.  In an ideal world I would just say, have her reschedule- but that’s not fair to the patient.  If I’m at work, my goal is to do what’s best for the woman I care for, which means my own mental well-being may be sacrificed.  I knew this coming back- just the mere act of returning to work personified it.

I survived.  I know this is a lesson in You Will Go On 101.  But as this spot-on article says… so what?  I survived but I’m still sad.  Sadder than I was before I saw that woman with her baby.  I survived, but my baby’s still dead.

There were moments of reprieve too.  I think I’ve made it clear that my life is not all puppies and rainbows.  But it’s not all doom and gloom too.  I recognize the good moments.

“When do you turn forty?” I asked one patient trying to figure out if I should order a mammogram this year or next year. “In February,” she responded.  My ears perked up- February is my birth month.  And Mabel’s.  I couldn’t help myself.  “Oh, when in February?”  “The 15th,” she says.  “That’s my daughter’s birthday!”  I said smiling and that was that.  There was no pause trying to figure out whether to use the present or past tense.  The sentence just spilled out of my mouth.  No follow up question, which I was actually glad about.  I don’t want people to think I’m fishing- purposely trying to get people to ask about my daughter.  But I also want those moments of normal mommyhood.  To feel what it would have been like for a split second, if she had lived.

And my final patient of the day was one that I was close to, someone I enjoyed.  When I entered the room, I could tell instantly she had read the sign.  She looked at me with sad eyes and asked if it was ok if she could give me a hug.  We spent the next few minutes talking about my daughter.  She asked what had happened, if it was ok for her to ask.  I told her that I love talking about my daughter.  I told her about how we knew she had Down Syndrome early on, the relief that came with the first essentially normal ultrasounds, the despair following the oligohydramnios diagnosis, the kidney problems, the lung problems and her short life.  God, I love telling her story.  The lovely woman cried for me and for Mabel.  She told me I looked like I was doing well, with almost surprise in her voice.  So I told her how I had cried earlier that day.  I have my moments.  As our time talking about me was wrapping up, she ended with a usually cringe-worthy saying.  She said “I don’t know if you are religious at all, but everything happens for a reason.  God has a plan…”  and a few other words that would make other fellow grievers gasp.  BUT it was ok.  She had proven herself- she was kind and compassionate.  I think those words were going to help her find some peace regarding my daughter’s death.  I didn’t correct her, nor did I agree with her.  I just smiled and returned the attention to her- to help her with her visit.

Back to work…the early days

My first two weeks of work I spent sitting behind a computer.  I was deciphering the barely legible scrawl the doctors used to document their patients histories.  Does that say cataracts or contacts? Ah hah, no one ever documented her hernia surgery.  Let me compile a list of all her abnormal pap smears.  I passed the hours wading through piles of charts, turning written word into organized script tucked securely into the network of electronic medical records.  Some charts were like walking through a museum- flipping through pages as much as fifty years old, seeing how charting has changed over time, reading as a young woman turns into an adult having babies and going through menopause.  I took a few patient phone calls.  Only one patient’s commented, saying matter-of-factly, but sincerely, “I heard what happened and I’m sorry,” before moving on to her question.  It was a perfect phone encounter.

I spent a day following one of the docs around.  I could help him with charting and it allowed me exposure to patients without any responsibility.  I could see how they reacted.  I ended up seeing a few patients on my own.  I was unprepared mentally- the plan was just to observe, but these ones happened to be mine and it felt silly to let someone else see them.  I made it through the visits.  Mostly, though, I sat staring at a computer screen, typing or mindlessly scanning.  I got bored.  This must be what an office job feels like, I thought.  It was good because I had little responsibility as I adjusted to being out of the house in the real world.  By the end of the second week, of working only 2 or 3 days each week, I was ready to move on.  I could see how overwhelmed my coworkers were and I felt like I was delaying the inevitable.  It was time to see patients.

I opened up my schedule for appointments and asked the staff to give me extra time with patients.  I’m slower charting because I’m out of practice and I wanted a little leeway in case patients asked or I became emotional.  A full load of patients is also stressful- running late, remembering everything- I’m still learning how to handle stress again.  I asked to see gyn patients only.  Having spent a day observing, I knew I wasn’t ready to see OB patients yet.

My first day of being a “real” midwife- as in one with a schedule, seeing patients- was, well, good.  I felt like the kind of midwife I wanted to be- spending all sorts of time with my patients, exploring each of their issues and writing really good notes.  I left work feeling good.  I feel guilty having such a light schedule- like I’m not pulling my weight, but at the end of the day I had a nice talk with one of the doctors I work with that reassured me.  I told her how my day went and she said “Good.  We have to keep you feeling like that.”

That was day one of scheduled patients- I left satisfied.  Today was day two and I left feeling less satisfied.  I saw patients bringing in their small kids and women who found themselves unexpectedly pregnant at their annual.  I was faced with reminders of what I lost around every corner.  I found myself having to counsel someone about whether they want testing for Down Syndrome.  I thought I wasn’t doing OB yet?

Take it slow, they all say.  But reality is- my workplace is suffering.  People are overworked; patients are having trouble getting timely appointments.  Staffing is changing, which is affecting schedules.  And the call schedule is made months in advance.  I’m being asked whether I should be on the call schedule in September.  I don’t know how I’m going to feel- I just started seeing gyn patients.  I want to scream I HAVE NO IDEA!

Right now, I’m tempted to say I hate my job.  That’s not totally true- I just hate the circumstances.  I hate that it’s summer, our busiest time and I’m disappointing everyone. I hate that I’m making everyone else’s job harder.  I hate that our staffing is changing, which makes me feel pressured to resume a normal schedule.  I hate that I dread going to work.  I hate that I sound like a whiner.  I hate that I’m not meeting expectations- those of others or my own.  I hate that my baby died and life just seems to go on.