A patients grief for her dad

I was reviewing her medical history and when we went over her family history, she told me that her father had died last year.

“I’m so sorry to hear that,” I replied.

She told me how his birthday just passed and the anniversary of his death was coming up. I asked if she did anything for the birthday or was planning anything for the anniversary. She peered at me with a look of surprise- like she never thought about doing something in remembrance.

“It’s just been so hard, losing my dad…” she started. She was young- younger than me by ten years at least, which meant her dad died young. She mentioned how her live-in-boyfriend didn’t quite understand, especially now that it’s been so long. She shrugged her shoulders, brushing it off a bit.

I looked at her in the eyes, trying to drum up all the compassion I could. “There is no timeline on grief,” I spoke the words I have read over and over again on blogs and articles and have tried to convince myself are true. “You will be sad forever. He was your dad. It’ll change over time, but you can always be sad. I’ve learned a lot about grief over the last year and one thing I know is that you grieve how and for as long as you need to.”

Her eyes got a little wet and she gave a small smile.

“Thank you.”

Have you been able to comfort someone in their grief?

Recurrent miscarriage and anxiety

Her blood pressure was high- she told me soon after we started her annual visit.

“I just get so nervous at doctors offices…especially the OBGYN.”

I explained to her it’s very common- there’s even a name for it “White Coat Syndrome.” She seemed relieved. We talked of ways to make sure her general blood pressure was normal outside my office- like at her primary care provider or at-home monitoring. She went on to tell me she has been feeling anxious lately. She’s always had anxiety but the past few months it has been ramped up- every since her miscarriage.

Reviewing her OB history she told me she had an unplanned pregnancy a few months ago and a few days later miscarried. The experience plunged her into a deep anxiety. She had a family member announce her unplanned pregnancy around that time too, which added to her complex emotions. We launched into a conversation about loss. She has had multiple miscarriages and two living children. Her recent miscarriage made her realize she how she in a way would want another child but doesn’t think she could handle the anxiety behind the risk of miscarriage. We were able to come up with a reliable birth control plan that would take away that anxiety. “It made me realize I guess I should be happy with the two children I have.” I understood her thinking, but wanted to shout, No! You can want more children! You deserve to go through a pregnancy without anxiety! I instead comforted her how I could. We side tracked a bit and talked of her family member who announced her pregnancy early, about how difficult it can be to watch others go through pregnancy without any obvious worry, without the real threat of miscarriage and loss hanging over her head. She was tearful at times and I think it felt good for her to say the words and feel validated.

At the end of the visit, she looked at me, tears still in her eye. “Have you gone through something like this, “ she asked hesitantly.

“I had a baby last year and she died after birth,” I told her. “I’ve never miscarried before. It’s a different kind of loss, I know, but I do know what it’s like to have the same feelings you do.” We talked a little more about loss and watching others seemingly easy pregnancies. She was good to me- expressed her sincere condolences and was very sweet. But what I appreciated most was the gratitude in her eyes. I could tell she just felt so thankful to have someone who understood.

Have you been on the other side of things- able to be the comforter, showing understanding?

Validation at work

“You’re really good at this!” she exclaimed as we finished up her visit. I had just put in a Nexplanon in her arm (a small subdermal form of birth control that lasts 3 years). It’s popularity is growing, mostly in my younger patients, who love the idea of something easy and long acting.

I smiled somewhat sheepishly. “Thanks!”

“No really, I mean it,” she went on, with her teenaged enthusiasm. “You’re so thorough and just really friendly. I’m so glad it was you who did this. You’re really good at your job, you know. It’s so cool, finding something you’re good at.”

Her words were well timed. I often have so many doubts about my place at work. Some days I feel like an empty shell. I smile and say all the encouraging words that I’m supposed to, but then go how and stew over things people say, especially around pregnancy. It doesn’t feel good to be “faking it” all the time. But on a visit like this, it was really easy. I love my teenaged and early 20s patients. I’ve made it known in my practice that I have a special interest in the adolescents, so my staff and fellow colleagues often book patients in that age range with me.   I need these patients right now- they remind me (even without them saying so) that I enjoy parts of my job, that it can be fulfilling and that I can find meaning in it.

“Thanks,” I told her more earnestly. “I sometimes need to hear that. I do love my job sometimes.”

She jumped off the table, her arm neatly bound by the pressure dressing, and I knew she’d be back next year to see me.

A few patients later, I sat in front of one of my prenatal patients. She comes weekly for an injections that helps prevent preterm labor in those who have already had a preterm birth, so I’ve see her frequently. Last time I saw her, she had been struggling terribly with heartburn that made her vomit and caused bad headaches after. She had exhausted all the over-the-counter and lifestyle changes to try to combat her discomfort without any relief. Las time I tried a non-traditional medicine- one for nausea that helps with headaches, though not usually used for heartburn. I told her I was unsure it would work, but worth a try because the safety was well established and her symptoms were non traditional.

Now, two weeks later, I asked how she was doing. She told me the new meds still didn’t help. She had waited to talk to me about it, avoiding the topic at her last visit with a different provider.

“I think it’s time we try a prescription heartburn medication,” I said. I explained how the medication is “category C”- a category given to medications to rate their safety in pregnancy. We usually try to stick to category A and B medications and take category C medications on a case by case basis. In her case, I think its worth the risk (not that there is established risk, simply many of the category C medications there is just not enough information).

“See, this is why she’s my favorite,” she turned her head and was speaking to her husband and brother in law who tagged along to the visit. “She explains everything and really tries to help.” She looked back at me and continued, “let’s give it a shot. If this doesn’t work, then really, I’m just going to have to deal. I don’t have that much longer anyways.”

I smiled for several reasons. Her compliment, like my other patients, was well needed, especially coming from a pregnant woman. I also appreciated her attitude- she felt like she didn’t have that far to go, she could put up with discomfort if she had to. She was 24 weeks and had plenty of time to go. I know so many patients who feel like the last 3-4months are an eternity with their discomforts, and here was this woman who understood the transience of pregnancy and recognized that sometimes we just have to put up with discomfort to simply be pregnant. It was a relief for someone to understand that. I put up with many discomforts during Mabel’s pregnancy- and though I might have mentioned some of them to my providers and friends, I always tried to make the point that I wasn’t complaining, just stating- because really I was just so grateful to be pregnant. Every day I had still pregnant was a gift, considering how high my risk for loss was. Even without that risk, I do truly believe everyday being pregnant is a gift. I just wish some of my patients realized that.

What gets you through the days? Where do you get your validation?

Parallels between the babyloss and Down Syndrome Communities

This was her first visit in the office since we converted to electronic medical records. Even though I always review a patients medical history when they come in, I pay extra attention when it’s someone’s first visit since the transition. As I went over her family history I saw listed in the “son- Down Syndrome.” I don’t think I knew this about her. Perhaps I did but it hadn’t meant anything particularly special at the time.

She admitted it had been a long time since she had been in for an exam- over two years and I gave my typical reassurance- “it’s ok, you’re hear now. We’ll get you all caught up.” Before we started the exam, she asked me “what’s new with you?”

“A lot actually…”

“Did I hear you had a baby?”

“Yes. And actually she had Down Syndrome.” I saw her face perk up a bit. “but she died shortly after birth.”

“Oh, I’m so sorry, “ she said. Her words were simple and genuine. I went on to tell her about how we knew our child would have Down Syndrome and we chose to continue the pregnancy. I told her about the low fluid and what it meant for the baby’s kidneys and lungs, how the prognosis was so uncertain.

“We had no idea if she would live or die…”

“Oh my, you have been through so much! What a year that must have been!” I really appreciated her words, because I felt like I had been through so much- the uncertainty, the hope, the letdown and the grief that followed. Sometimes I wonder how I got through it all.

As I went through her exam, we continued to talk. I asked her about her son and learned he was 16 years old and low functioning- non-verbal, but a very sweet boy. She told me stories of their trip to Disney World and his school experience. She told me about her pregnancy with him and the surprise birth diagnosis.

“It’s such a treat to talk about him. Usually when people hear he has Down Syndrome, they think of it as a bad thing and avoid the topic.”

I marveled at the parallel. We continued to talk about the similarities between raising a child with Down Syndrome and being a babyloss mom. The avoidance of the topic, the unhelpful platitudes we receive, the entrance into a very exclusive club you never wanted to be in.   The visit went well beyond the 15 minute slot allotted, but it was worth it. She needed it- and so did I.

At the end of the visit, she asked after another midwife who used to work in the practice. I told her about the new job she had, how well she’s doing and how we still sometimes see each other. She had seen that midwife for years before I inherited her as a patient when my colleague left. “I used to look forward to coming for my annuals, because enjoyed the time I spent with my old midwife so much,” she told me. “But now I get to look forward to seeing you.”

Have you found someone in a different community outside the babyloss world who has similar struggles?

reblog: Risk versus Possibility

Check out this post: http://my-invincible-spring.blogspot.com/2015/02/microblog-mondays-risk-versus.html

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while weshy away from risk.

Oh my.  Here I am, counseling patients every day about whether they want genetic testing for things like Down Syndrome, having had and lost a very wanted child with Down Syndrome, and have never thought of this simple word choice.  Reading this blew my mind and will chance my terminology.

Many thanks to Sadie at Invincible Spring for bringing this to light.  Read the whole post- short, sweet and worth it.

 

My 35th Birthday

My birthday was last week. I turned 35.

I used to be all about birthdays.  As someone who chose a career that plays such an integral part in birth-days, and who even started a non profit centered around birthday celebrations, I can say I really did find people’s birthdays very meaningful. It was the one day of the year, where we exclusively celebrate someone’s life- we show our delight and appreciation that this person is in our life and has lived another year. Sure, we should be doing this throughout the year (kind of like Valentine’s Day- we should be celebrating our loved ones every day, not just on the commercial day), but there is some fun in make a big hoopla about someone on their birthday.

Last year I celebrated my birthday in the hospital. It was still a joyous time. I still had some hope- the reality of a dead baby hadn’t hit yet. After Mabel died, I pretty much stopped with the birthday hoopla. My birthday non profit went on hiatus (for other reasons as well). I stopped doing call- being such an intimate part of a baby’s birth-day. I stopped posting cute facebook messages on people’s birthdays. In fact, I barely recognized anyone’s birthday. And for those reading, who did not get the usual birthday love from me this year, I am sorry. I thought of you but could not write the words. The celebration has been sucked out of me.

So this year, my first birthday since Mabel died, I wasn’t particularly excited for my birthday. I wasn’t dreading it- it just simply seemed another day. Chris is away on business, which also took the kabash out of it. I filled the day with work and appointments and had a very nice dinner out with friends. But the reality is, my birthday came and went, seemingly uneventfully, and now I am one day closer to my daughter’s birthday (or death day?). Our birthdays being so close feels like my birthday will always be a reminder of what day is to come next. I’m not sure if I’ll ever feel like truly celebrating knowing what happened a little over week after my 34th birthday.

But it’s ok. Because it’s really just another day.

How have your birthdays been since your loss?

Sunday Synopsis

*potential tirgger* The nationwide superbowl commercial. I watched the superbowl over the internet where the commericals were different, so I didnt see this ad until I started reading about it on my facebook and blog feed.  I wonder how I would have felt if it suddenly came on, instead of having much preparation and nowing what I was about to watch.  There has been lots of talk about it- how it was a buzzkill, how it was a trigger and how it was validating, depending on the audience watching.  I’ve read a few good posts about it and here are some that resonate with me. This one and this one i thought were both good reads.

The saddest story Roald Dahl ever wrote.  I had no idea Roald Dahl was one of us, having experienced child loss.  This story came up in the midst of a rampant measles outbreak – and though I am strongly pro-vaccination, I am not intending to post this to start a conversation about vaccination.  Instead I post as one of those eye openign reads, where I realized our club is bigger than we know.  I have been reading (in warmer weather) The BFG by Roald Dahl (one of my favorite childhood books) to Mabel when I visit her grave, so learning of his loss seemed especially poignant.

Family begs for camera stolen with first and final moments of baby’s life-   Oh gosh, could you imagine? Some of us weren’t fortunate enough to get photos at all, and those of us who did (whether our own, hospital ones or professional ones) I’m sure could imagine what it would be like losing them.  I’ve actually thought about- what if our house goes up in flames- what would I save? Literally the first thing would be either my camera (with her photos still on it- I cant seem to erase them despite having downloaded them all) or her book and box.

Why your doctor is always late– I find this a fascinatingly accurate depiction of what my day is like.  For example, on friday I saw 26 patients. Whew!  I don’t have control over my schedule- dictating how long I get with each patient. I am a firm believer of giving each patient the time they need (within reason).  I also have a 15 minute rule- allowing pts some wiggle room to be late, but having them reschedule if they are beyond 15 min out of respect to my other pts.  Some pts need to be seen regardless (certain prenatals) and if they’re super late, I ask them to wait and I’ll work them in.  The take home message for this (for me, at least) is: I’m sooo sorry I’m running late- the reason I am is usually either because I’m trying to give good care, there was an emergency or because I had a pt late. I know from a pt perspective  it’s super frustrating to wait and I respect that.  It’s also super frustrating to us to be running late for your sake.  We are all frustrated with the system.

The story of the dad who accepts their baby with Down Syndrome, while the mom supposedly rejects him.  First read this article.  Then read the counter one.  I’m not sure what the whole story is, but what seems to be true is that this couple had a baby who was given the diagnosis of Down Syndrome at birth and it caused a bit of a rift between the couple.  Armenia doesn’t have good support (socially or structurally) for children with Down Syndrome.  I want to villify the mom and make the dad the hero, but I can’t totally commit to it because it’s very hard to get that diagnosis at birth, especially in a country that is not accepting.  If the story hadnt gone viral, would the couple have worked things out?  Who knows.  But I do appreciate how it is in a way giving positive attention to children with Down Syndrome.

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?

I’ve always wanted a big family

I sat across from her in the exam room. She was there with her partner and the youngest of her two children, a toddler. She had no clue when her last period was, but based on some recent negative pregnancy tests and now positive, I knew she was in early days. I had congratulated her when I entered the room and she welcomed my words with a smile.

“So were you guys trying or was this a surprise?”

I ask pretty much all my patients this, especially at these kind of visits- one we call “confirm pregnancy” appointments. It’s a quick early visit, to establish with our test that a woman is pregnant and to see if they need an early ultrasound. Plus we are able to start some education and answer questions before the typical initial pregnancy appointment at 8-10 weeks. I ask this question because sometimes people come to this visit to discuss options- I’m trying to see if I need to discuss termination or just plow forward with all the excitement of a new pregnancy. I’m also trying to assess her emotional needs- does she have support? What are her worries?

“Oh, it was a surprise!” She said with a laugh.

“So were using any birth control recently then? Pills? Condoms…?” I ask this to help assess her pregnancy dating. Recent pill use can affect timing of ovulation and thus pregnancy due dates.

“No…” A typical answer that always makes me laugh internally. In my world if you’re not contracepting, you are actively trying to get pregnant.

“But you seem happy about things?”

“Oh yes! I’ve always wanted a big family!”

I looked at her, in her twenties now pregnant with her third child. No history of loss. Smiling, happy, accepting and expecting that things of course would work out.

I’ve always wanted a big family. In the beginning of our relationship, Chris and I discussed how many kids we wanted. He wanted two. I wanted five. He came from a family of two kids; I came from a family of five. No wonders there. Because I got married and would be starting a family later in life, I knew that five was unlikely- we sort of agreed on three (though he would sometimes would argue for two still). When Mabel was diagnosed with Down Syndrome, I became firm in my belief I wanted three kids. We needed to ensure she had siblings who would care for her when Chris and I were no longer able to or weren’t around.

I now laugh at myself- even then- at the naivete of those thoughts. As if we have some sort of control of how many kids we get to bring home (I recognize in a way we do- with the medical marvels of birth control and all…). I didn’t realize that when I was wanting three kids I should have been hoping for three living children. Silly me!

I recently posted about grieving parenthood but I’m also grieving the loss of my future family dreams. If I’m lucky enough to get a take home baby- I no there are no guarantees that I’ll be lucky enough to get another. In another world I thought being an only child seemed like a cruel thing. But I wasn’t thinking about the fact that parents might not have had a choice. My childhood was defined by my large family- I want a semblance of that for any future child I might be lucky enough to have. But I feel like asking for more than one living child is greedy. Just give me one, please. In addition to grieving active parenting, I’m grieving parenting a large family- and the innocence in that statement I heard in the office… “I’ve always wanted a big family!”

How have your visions of your future family changed after loss?

Sick days

Sometimes I just wish I could take a sick day.

On a day when I’m feeling sad- or want to feel sad- when the idea of facing pregnant woman after pregnant woman just feels like too much, overwhelming, I wish I could call in and take a mental health day. Spend the day between the couch and the bed, looking at photos, distracting with bad tv.

In medicine, providers rarely take sick days. I’ve had colleagues work with IVs hidden under their sleeves rather than call in sick, co-workers who see one last patient before they themselves go to the emergency room. I was feeling really bad one day, a few years back (I rarely get sick). I didn’t eat anything but crackers for lunch, which was highly unusual for me. By the end of the afternoon I was severely nauseous and struggling through each patient. With two more to go, I quietly vomited in my office trashcan before heading into the next room. My sonographer caught me afterwards saying she had a patient freaking out over her ultrasound and could I talk to her. I could not say no. I stood patiently in the room as she cried over a minor finding on the sonogram (which in the end turned out to be insignificant). After consoling her best I could I left the room to finish vomiting.

If I can’t even call in sick for that, how can I justify taking a mental health day?

Of course, I could simply make the call. But the twenty-five patients on my schedule that day would have to be moved- those who need to be seen would be smooshed into my coworkers already busy days and others would be overbooked with me when I returned. So calling in sick not only burdens my colleagues, but also makes my following days in the office that much worse. I often felt like this in high school, rarely staying home because I wouldn’t want to miss the classes and have my return be a mess. It was just easier to suffer through.

So that’s what I do now when I’m having a bad day. Suffer though. I also have Wednesdays off which helps- knowing I can always use that day for my grief. I just have to postpone all my feelings. It’s hard, though, scheduling my sorrow. Sometimes I wish I could simply take a sick day.

Do you take mental health days? How do you spend them?