so I’m not perfect…

I was out for a run with Muppet and came across a lemonade stand- some neighborhood kids raising money for cancer. I was running by at just the right time, with several families approaching the stand. When the kids asked if I wanted lemonade, I regretfully said I didn’t have any money, but I’ll try to come back when I was done with my run.  Just as I was about to take off, I saw you there. My smile brightened with recognition- a fellow professional in my field and a someone who chose my practice for care.  You have a son a few years older than Felix and I was reminded seeing you there that you live in my town! Since I”m not attending births and you work in a different practice, I haven’t seen you in a while- in the past I crossed paths with other OB professionals on the labor floor, a place I don’t often visit these days. Seeing you with your son, gave me pause. We should be friends, I thought.

I stopped and chatted with you, saying hi to your husband and letting your son pet Muppet.  I learned your son had some developmental delays, something I hadn’t known before.  I straight up blurted out- “I need local mommy friends,” a truth so prevalent lately. I find it a little hard to make mommy friends easily… something I’ll elaborate in another post…but since you’re in my professional community, I’m pretty sure you know my story. You know I’ve lost a baby.

You given me your number and tell me how you have a good group of local moms who get together every now and then. You warn me that the moment you say you’re in the OB field, everyone likes to tell you their birth story.  I laugh in total understanding. You roll your eyes and we talk briefly about yours- how you tried so very very hard for a vaginal birth but it just wasn’t in the cards despite everyone’s best efforts. I could see how frustrated you could get hearing other’s stories especially when you felt frustrated with your own. It’s like hearing how someone has a beautiful birth when yours was traumatic. It hurts a little.

And then I blurted out something I wish I hadn’t.  “Well did you hear about Felix’s birth story? How I didn’t make it to the hospital?” You smiled and laughed a little, telling me how you read it in the paper.

I realized shortly after I said it, that I did exactly what you had just said was hard. I told you my birth story. I’m sorry.

I wanted to tell you, that I often blurt out Felix’s story because I can’t so very easily with Mabel’s because no one likes a story that ends with a baby dying. Blurting out his story makes me feel a bit like a normal person. I wanted to tell you that Felix’s birth story is a tribute to Mabel, because there is no way he would have come so fast had he not been my second child. I wanted to tell you that when I learned your son had some delays, I felt a small kinship with you because Mabel would have had delays too and I imagine parenting a child with special needs is especially hard, but it’s just what you do, isn’t it? I wanted to tell you I shared Felix’s story with you because I assumed you knew about Mabel.

In that brief exchange we had, I am reminded that I am not perfect and sometimes says things I wish I hadn’t. It was a good reminder that others do the same and to give them a little leeway.

Have you ever said something you regretted? Do you hold yourself to a high standard of always saying the right thing?

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Pylectasis

The sonographer grabbed me in the hallway to tell me about the patient of mine she just scanned. The ducts in the kidneys looked a little dilated- upper limits of normal. She wasn’t sure if it was a real issue or not, but wanted to talk to me about it. “let’s send her for a level II,” I said, referring to an ultrasound over with the Maternal Fetal Medicine Specialists. “They’ll be able to tell.”

I popped in to see the patient quickly, just to tell her my plan. I wasn’t too fazed, because my sonographer wasn’t too fazed. And I told the patient just so. “Just to be safe, we’ll have them check it out.”

The next week I received the ultrasound report in my inbasket. “Bilateral pylectasis” it read. Water on the kidneys. The sonographer’s intuition was right. I was glad we had sent her for the follow up scan. She would need follow up ultrasounds in pregnancy to see what happens with the kidneys- sometimes the water goes away and there is no issue, sometimes it persists and the baby will need follow up with urology.

Not long after I saw the report, I got a phone call from the patient. She was upset.

“They really pushed me to get genetic testing!” she exclaimed. When I had offered her genetic screening for the common trisomies, like Down Syndrome, she had declined earlier in pregnancy. It wouldn’t change her management; she would have the baby regardless, she told me. But with the new news about the kidneys, the doctor had tried to explain that there can be an association with pylectasis and Down Syndrome. She ultimately decided to do non invasive genetic screen- cell free fetal DNA, which is an accurate blood test on the mom, that looks for fetal DNA in her blood. It tests that DNA for trisomies like Down Syndrome. It’s highly accurate.

At first I thought she was upset because she ultimately didn’t want genetic testing. “We can cancel the test,” I told her. But no, that wasn’t her issue.

She was upset because they told her that her baby could have Down Syndrome. She wasn’t even upset about the potential diagnosis, she was more upset at the presentation of it. From what I could interpret, she thought they were being so negative, when chances were, things would be fine.

We talked about how the doctors over there at Maternal Fetal Medicine are used to giving bad news- because they have to do it so often. That can affect their presentation. And it’s there job to tell every possible outcome based on what they find.

“If my baby has Down Syndrome, fine. I’ll deal with it. But don’t just jump to conclusions,” she vented about her experience there.

Ultimately she wanted to vent. And also hear that her baby might not have Down Syndrome. She rather remain optimistic until proven otherwise.

It was a strange conversation for me- one about Down Syndrome, but also not about Down Syndrome. She knows I had a baby that died, but I don’t think she knows that she had Down Syndrome. Out conversation could have sparked all sorts of feelings- a baby with kidney issue, possible chromosome issue- but surprisingly, it didn’t.

Is this progress?

Will my baby live?

When I got that news that Mabel had low fluid, I truly understood that the prognosis was bad, but it was hard to really wrap my head around the idea that she might actually die. Part of the difficulty was that no one would actually say she was going to die. Obstetrics would hint, very strongly at it, but couldn’t tell me with certainty. Pediatric specialists wouldn’t comment at all- they all simply said we’d have to see when she came out.

At one point we met with a neonatologist that was finally a bit helpful in that respect. I had been getting weekly ultrasounds for several weeks when we saw him- had had one that day even, which at that point had shown anhydramnios, or no fluid at all. When he heard that, his expression became very serious. He too couldn’t tell us for sure our baby would die, but he was able to get across the point that he was not optimistic for our child. It’s possible he told me nothing new, and after several weeks I was finally able to really hear someone tell me bad news. But I think it was also helpful that he dealt with babies like Mabel. Before him, those giving me the dire prognosis were in OB- they didn’t deal with the baby when she came out, so I didn’t give them as much credit as I should have.

Despite my better understanding of her poor chances, I still remained hopeful. Perhaps it would have been easier if someone could have just told me she would die- her condition was incompatible with life. Then I might have reframed my pregnancy differently.

Later, when I was hospitalized, my midwives came by daily to check in on me. I had many visitors, and everyone tried to remain upbeat. I was pretty positive myself, finally feeling “safe” on continuous monitoring. But I had my moments too- I often just wished I knew what was going to happen (so I could prepare- I thought.)

One day when one of my midwives was visiting, we were having a more serious conversation- about the what ifs. Of all my care team, I talked to her most about the what ifs- what if my baby died? How do I be a midwife? How do I answer when asked if I have kids? She had given me the book “An Exact Replica of a Figment of my Imagination” that just felt so powerful and helpful at the time. For some reason, I could talk to her most easily about the hard stuff. Maybe because others would say- “don’t think like that!” or “no! Miracles happen! Babies surprise us!” or “you don’t know what’s going to happen, why plan for the worst?” But she wouldn’t. I suppose she was the perfect example of empathy. She would stop and really think about what it must be like to be facing such an unknown reality. On one of our visits in the hospital, I asked her “Can I ask you something honestly? Do you think my baby is going to live?”

“No,” she said softly.

And at that time, it was helpful. Partly because I had been asking- not simply being told. Partly because it was her- she wasn’t trying to get me to understand, she was simply imagining it for herself.

I recently saw her for a concern of mine- one that got me super nervous.   Leading up to my appointment I was calm, pushing away bad thoughts- but once I got there, I couldn’t hold back the tears. At the end of the visit, one she basically spent reassuring me, I stopped her and said,

“When I was pregnant with Mabel, I asked you if you thought she would live. You were honest with me. That was really important to me. Today, what do you think- will I be ok??”

“Yes,” she said softly, in that same tone of voice she used with Mabel.

And I believe her.

Do you have someone you trust to tell you the truth? Someone you can hear the truth from? Is there someone you look to for reassurance that everything will be ok?

We are all sad

I reviewed her chart as she sat in front of me for her new OB appointment. Two of her children had died in a freak accident in the recent years and now she was pregnant again. She told me this was a planned pregnancy. “This must be a complicated happiness,” I said. She nodded in complete agreement. I shared, that I too had lost a child- under very different circumstances- and we had a little side conversation about child loss.

“I had some people tell me ‘I know exactly how you feel because my child died too!’” she said, “But I’m like, ‘no you don’t. Your child died in gang related gun violence. He was doing something he shouldn’t have been doing. My children were innocently sitting at home!’”

It was a powerful statement.

Hierarchy of loss. It is something we discuss a lot in the loss community- loss is loss, we say. Is there a hierarchy? I think yes and no. I think it is a different loss experience having a miscarriage at 5 weeks and one at 12. I think it is different having a stillbirth versus a neonatal loss. I think it is different having a neonatal loss versus child loss. I think it is different having a child die from something preventable versus random. I say I think before each of these statements because I have only experienced one such scenario. I know there are some people out there unfortunate enough to have experienced more than one of these and perhaps these people can speak better of how, if at all, the losses are different.

I often feel almost guilty in the loss world because my baby was born alive- I got to meet her, though briefly. Many of my loss friends never had the privilege of hearing their baby cry- whether it be through miscarriage or stillbirth. Weird, right? To feel some sort of guilt about my baby living? I had to experience other loss, like the loss of a carefree pregnancy and the pain that comes with wondering if my child is suffering. But I also know exactly why my child died, while others won’t ever have that knowledge. I could go back and forth about how my loss was harder in some ways and easier in others- but it isn’t a competition. There are no winners in babyloss. All I really want is the pain related to my loss acknowledged as real and legitimate.

My patient is right in a way- her loss is different because her children were dong nothing wrong. The other woman’s child was engaged in risky behavior. But my patient is misguided in a way too- I’m sure that other woman was not only mourning the death of her child, but also the loss of what he could have been- the child not involved in gangs. She probably had complicated guilt over her child having some responsibility in his own death or maybe feels responsible herself for being unable to keep him out of gang violence.

I think what it comes down to is no one knows exactly how each of us feels, but we are all sad over our losses- the early ones, the expected ones, the preventable ones and the random, unexplainable ones. I know I am constantly seeking the person who knows exactly how I feel, but I think I’d be hard pressed to find another 34 year old midwife who lost her first child to an extremely rare and random combination of birth defects. So for now I take solace in the comforting words of others who share aspects of my loss. Those with infertility know what it’s like to wait almost two years and have no baby to show for it. Those who miscarry know what it’s like to have the dreams of a normal pregnancy ripped away. Those who chose to terminate based on a difficult prenatal diagnosis know what it’s like to make extremely hard decisions for their child.  Those who have a stillbirth know what it’s like to birth a baby but leave the hospital with empty arms. Those who have neonatal loss know what it’s like to watch their children die, wondering if they suffer. Those who have child loss, preventable or not, know what it’s like to bury a child.

We are not the same, but we are. We are all sad.

What are your thoughts? Is there a hierarchy of loss?

 

A little glucola, a little Mabel

“Ugh I don’t want to taste that syrupy gross glucola again,” she said adamantly.  A long discussion ensued, where I reviewed her risk for diabetes- her size, her family history, and where I went over the risks of undiagnosed diabetes, including stillbirth.  I often have patients complain about the diabetes test.  It’s gross, but it’s necessary.  I offered her a jellybean test or referral to do finger sticks to assess blood sugar.  She didn’t seem interested.  I tried to instill how important the test is.

“I won’t sleep well at night until I know you don’t have diabetes.  I want to make sure your baby is okay,” I pleaded.  She reluctantly agreed to go before her next appointment, though I wasn’t convinced.  I knew this patient well- she’s generally jovial, educated and opinionated.  She had been my gyn patient before pregnancy and was seeing me exclusively for her prenatal visits.

“You better be there when I deliver!” she coaxed me.

“You know I’m not doing deliveries right now, right?”

“Well you’ll do them by January 1st, right? In the new year?”

“We’ll see. When I’m ready.  I’m taking it day by day right now.”

“Why aren’t you ready now?”

“My baby died.  It’s too sad for me right now.”

She stood up and gave me a big hug.

“So this is why you want me to do the glucose test, huh?”

“I know what it’s like to not take a baby home from the hospital.  I don’t want anyone else to have to do that.”

She did her glucose test right after the visit.  She passed. I’ll sleep better.

Mabel came up organically in this conversation, but I worry some people might view me a using her to guilt people.  I don’t usually bring her up under these circumstances, but it just came out naturally- and frankly, it felt right.  What do you think?  Am I using my experience in the wrong way?  Have you had a similar situation?

What’s it like to deliver babies?

“Do you deliver babies too?”  I nodded and gave a quiet “yes.”  It’s a hard question to answer these days.  Yes, it’s part of my job.  No, I am not doing right at this moment.  Yes, I do want to someday.  No, I don’t know when I’ll be ready.

“Does that mean you could deliver my baby?”

“You have a one in five chance, it’ll be me” I told her.  It was my standard line- there are five of us midwives who do call and though on occasion our docs end up being the one catching their babies, we midwives attend almost all of the vaginal deliveries.

“What’s it like?” she asked.  “To deliver babies?”

I paused.  I haven’t been at anyone’s birth except my own since December.  What’s it like now?  I have no idea what it’s like to be present at one of the most intimate, life changing, joyous moments of someone’s life.  What it’s like to hold a warm squirming, crying baby up and place that baby on her mother’s abdomen, presuming that’s where she’ll stay until the mom is ready to let her be weighed.  What it’s like to hold a baby that will likely live.  I don’t know what it’s like to do that without being reminded of how none of those things were true with my baby.  My best guess is that delivering a baby now would be painful, heartbreaking and soul shattering.  Handing a woman the baby she will likely take home will be grief inducing.  Just the thought of it, the mere writing of these words causes my throat to clench and my heart to beat more wildly.  I have to breathe deeply to calm myself down.

Up to 5% of women experience PTSD after childbirth with a much larger percentage experiencing some symptoms.  Traumatic birth is the most common precipitator of PTSD in these women.  What defines traumatic birth?  Some definitions are obvious- an emergency c-section, problems with the baby, feeling violated- and some might be less obvious.  Some women can feel traumatized while their providers could think everything were perfectly.  My birth was beautiful and traumatic at the same time.  I found what beauty I could in it, but I did not want to actually birth her.  My baby was whisked away from me a moment after birth.  My baby died.  Whether or not I have PTSD is unimportant to me- but I definitely have some symptoms- avoiding, intrusive thoughts, hypervigilance at times, detachment at other times.  Right now, the idea of returning to attending births honestly feels like reliving the nightmare part of my experience.

I do want to do births…eventually.  It is the most amazing thing to be the first hands to welcome a baby into the world and to be a part of that intimate life changing moment for a family.  I want to help make births positive, not traumatic experiences, for women.  That is my goal.  For now I am on the schedule to return to births in September.  I am unsure if I will be ready.  If I’m not, I hope I can make it work with my job.  But in the long run, in the future, I really do want to return to birth, when it’s less traumatic for me.  Because it is truly amazing.

“What’s it like?” she asked.  “To deliver babies?”

“It’s the coolest thing in the world.”

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.