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?

Sunday Synopsis

10 types of disenfranchised grief– though the list addresses miscarriage and abortion, I’m going to argue that babyloss in general should be counted.  Though, in a weird way, I consider myself “lucky” in the babyloss world (hah!), because my daughter technically lived for 6 hours and thus gets some recognition for life, I also feel disenfranchised because few people met her, so she wasn’t real to them. Plus she had birth defects, and I constantly worry that people think she was worth less because of them.  And then there are those who lost babies to stillbirth- the same kind of disenfranchised grief.  And those whose babies lived only inthe NICU.  When it comes down to it, people listen easily when people talking of their parents,  or grandparents dying, but nobody likes to hear about a dead baby.

64 things about grief– do you agree? anything else you’d add to the list?

Grief Gifts Guide– What do you think?  Did you get any gifts like these for the holidays?  Did you get anything else that you would add to the list?

Confessions of a burnt out physician– Though this might not resonate with those non-providers out there, I hope it can help bring some understanding.  I do love so many aspects of my job, but the intense timing of it is not one of them. I’m given 15 minutes to see patients- whether it’s a simple fetal heart rate check or discuss their recent miscarriage.  It’s not a lot of time.  It does force me to put up some barriers and boundaries, which is not how I envisioned practicing when I enrolled in midwifery school.  ah, reality.  I also post this because I know many of you have had difficult experiences with your providers.  This is not an excuse for bad behavior, but perhaps can provide insight into the pressures at work.  I remember a patient being ticked about waiting 45 min for her routine prenatal.  I wanted to tell her, “I’m sorry I’m running late,  but I just spent all that time talking to the patient before you who is carrying a baby that is going to die.” I couldn’t and didn’t, so I simply apologized.  Sometimes the stress of closely packed patients can make some providers even leave the profession.

Experiences which expanded my empathy  I find babyloss has certainly expanded my empathy in many ways.  I am much more sensitive to loss in general, especially at work.   Though, sadly, I also find some situations harder to find empathy as well.  You?

So much sadness.

She stared up at the ceiling, eyes welled with tears, while I stared at the screen, searching, looking for anything that would give me better news. Moments before we were in another exam room chatting cheerfully about the latest developments in her pregnancy. She had just started feeling movement and her fundus was a few fingerbreadths below her bellybutton, just where it should be for 17 weeks. I searched with the doptone for the classic “thud-thud-thud” of her baby’s heartbeat but all I hear was static and artifact.

“Baby’s being stubborn,” I said, a sinking feeling already settling in my gut. “Let’s go take a look instead.”

I looked and looked, feeling helpless- the machine was old; I’m not a trained sonographer- but I couldn’t see the telltale flicker that told me everything was alright. Everything was not alright.

“I’m having trouble finding a heartbeat. “ I put down the probe as tears filled my eyes. I didn’t hide them- they were no match for hers as she let out a panicked and woeful “No, no, no!”

I sat her up and hugged her hard. I told her I couldn’t tell for sure- old machine, needing a formal ultrasound- but I was worried. I had to send her to the hospital. She called her husband, forty minutes away and I repeated my uncertainty- it seemed what she wanted to hear, what would get her through that endless wait for her husband and then the drive to the hospital. I sat with her for a bit and then had to go see more patients. Between each one I checked back in with her, not having any words to say to would ease the pain, because there are none.

Husband arrived, off to the hospital they hurried and everything was confirmed. Her baby had died.

Here I am, a babyloss mom myself and I was still at a loss. I thought of all the awful experiences people have had with their providers (and remembered the good ones too). But I had a sudden empathy for the bumbling providers. Some behavior is inexcusable, but there are many other clumsy caregivers who just wish they could take away the pain, but know they can’t. Stupid words fall from their mouths, medical processes are focused on- all because they were helpless. Their pain is nothing compared to the patients, but I had a little more insight. It had been a long time since I had to say the words and it was my first time since my own loss. It sucked. It was terribly heart wrenching for me and even more so for my patient.

So much sadness.

What was your experience hearing bad news? What was done well? What do you wish could have been done differently?

True empathy

When I saw her name on my schedule, I knew it would be one of my visits that would run over the allotted time. Sometimes fifteen minutes isn’t enough to do everything- get a full history, address any problems, order tests, do an exam and just get caught up on her life. We had spoken on the phone not long after I returned to work. She was the first person I told about Mabel without being asked.

“You know, I had a baby with Down Syndrome too,” I had told her over the phone. At the time I had given her a brief version of what happened because she was one of those people who are kind down to her bones and because she too had a child with Down Syndrome. Our circumstances were different- one with a prenatal diagnosis, one with a birth diagnosis, one whose baby lived, one whose baby died. On this day, I got to see her in person.

Before starting the exam, we chatted and she showed me a photo of her son. I’m often shown photos of people’s kids and those moments are so bitter for me. What they don’t realize they are doing is saying “look what I have and you don’t!” It feels shoved in my face. But I try to smile and say an encouraging word before quickly changing the subject.

But with this patient it was different. I took the phone from her and really looked at this child, with my old eyes- the ones that found something cute in every baby (and with this one it was easy). She mentioned she was doing our local buddy walk and I said excitedly that I’d be there too.

“And how are you doing?” she asked- really wanting to know.

“I’m trying. It’s hard,” I answered honestly and then reached into my pocket for my phone. “Do you want to see some photos?”

She oohed and ahhed over the photos in the most perfect way, comment on her hair, asking more details about what happened. “Were you with her when she died?”

“Yes, she died in my arms. I was grateful for that.”

It amazes how such simple interactions can just warm me from within. “Where you with her when she died?” What a question. It meant she was trying to picture it- that’s true empathy. She was familiar with the NICU as many parents of children with Down Syndrome are. She knew the meaning of getting heart wrenching news at birth. She knew what it was like to be given the unexpected.

Has there been someone in your life who has shown true empathy?  What would true empathy look like to you?

 

 

Empathy is a two way street

I’ll be the first to chime in with an “Amen!” when those in my community vent. We hear others complaining about not sleeping through the night because of a colicky baby or how they wish they could have some alone time just once in a while. We wish we could have that too and hearing people complain about what we wish for, just reminds us all the more what is missing. Sometimes our frustration is pretty valid, like how this loss mom describes how hard it is to read how people call their kids unseemly things in the name of humor. It’s hard for a bereaved parent to listen to others not appreciate what they have. I can get angry, especially at work where I see pregnant women and moms over and over. Sometimes my anger is justified. Sometimes it’s not.

You’re smoking marijuana while pregnant and mad at me for finding out? Sweet geez! You have no idea how good you have it! I would love to be pregnant and so unconcerned about my baby’s health that I make poor choices. Justified

You’re crying because you haven’t slept in days due discomfort of forty-one weeks of pregnancy? My gosh! You have no idea how good you have it! I wasn’t lucky enough to experience 41 weeks of pregnancy, let alone a baby to take home at the end of it.   Not justified.

I complain how people lack empathy for me and my situation. But who am I to speak, when I can’t show empathy towards others? Can I be mad at people when they make stupid decisions like drug use in pregnancy or calling their kids hurtful names? YES. I can and I will. Can I be mad at people who are suffering in their own world, even if there suffering isn’t as great as mine? NO. It’s like someone who has lost her baby and her husband looking at me and saying I have no idea what sad is. Or lost two babies. Granted, I think about these things. I have experience a loss that some would call the worst kind of loss. But not me. I know different. Since I have tasted badness, I know that there could worse. These women suffering in the discomfort of their expectant bodies just haven’t known worse. They are not thinking, “I should enjoy this moment of pregnancy even if my hips hurt, because my baby could die.” No one should think that. I’m sure, we of the babyloss, probably do think that with subsequent pregnancies; it’s where my mind goes when I hear these common complaints of pregnancy.

I need to learn to reel it in and bury these thoughts. They are unfair. I need to re-learn empathy. I remember a midwife who was once able to sit with her patients and empathize with their aches and pains. She was even able to do while pregnant with baby who was going to die. But she is not me anymore. I struggle everyday to be that midwife. I struggle to merely fake it.

What Mabel can do

I received an email from a friend and fellow midwife not long ago.  I wrote yesterday about what I didn’t want my blog used for.  I don’t want her story to have a negative impact.  This email my friend sent is the opposite.  This is the intended purpose of my bog.

“Anyway, today I happened to be at a gathering with a mother of one of the little girls who was killed in the Sandyhook shooting. They built a playground in her honor near our house that we like to play at. I kept wondering if I should mention anything, or, if it would make her feel badly at the party to remember. But, I thought I you, and all you and Mabel, and that you like to talk about her and have people remember her. I thought this mom might like it too. I introduced her to [my 3 year old son] as “Alison’s mom”, and he told her how much he liked Alison’s playground. I think it was the right thing, I want to thank you for sharing and teaching.”

Learn.  Empathize.  Remember.

This is what Mabel can do.

How do some people figure it out?

It’s like it never happened, like she never was here.  I see one patient after another and we talk of their exercise routine.  I ask about their sex life.  We discuss their vaginal discharge.  I am transported back to a year ago, when I was actually pregnant, but didn’t know it yet.  My life hadn’t changed.  I went to work each day and helped women figure out their birth control and navigate through abnormal pap smears.  Fastforward to right now and when I’m at work, and it is the same.  There is a sign with my daughter’s photo and her life summed up in a short paragraph, but otherwise, no difference.  I sit across from these women and for a moment I am distracted, thinking of their lives instead of mine.  They don’t ask, because the visit is about them (as it should be).

At lunch time I say to one of my nurses who has been especially helpful in the past few months, “maybe I should take the sign down?”  She asks why.  “Because no one says anything, so it feels a little pointless.”  We decide to keep it up longer, at least until I start seeing OB patients.

Then I am seeing my last patient of the day- a young woman who I have never met before.  As we say our introductions and I ask how I can help her, she pauses and says, “I just want to express my condolences…” and says a few more kind words.  She read the sign.  I was so resigned to the fact that though my daughter’s absence is a constant presence for me, it might not belong in the workplace that I became a little teary eyed when she spoke her words.

I raised my eyes from her chart and looked at her.  “You are the first person to say something all day.  Thank you.  That is so kind.”

I know people don’t know see the sign.  Others don’t what to say and I don’t blame them.  I used to not know either.  But then every now and then I have an interaction like this one.  It amazes me how some people can figure it out.  Is it something they are born with, this deep-rooted compassion and fearlessness to say something?  Was it taught to her as a child, raised by parents who showed her the grace in saying something, anything?  Has she learned her empathy the hard way, having lost something or someone she loved?