Letting myself have fun

A year ago I spent a friend’s birth trying to bowl with my very pregnant belly. It was one of the last hurrahs before going into the hospital. Chris and I joked around, standing back to back, me 32 weeks pregnant with Mabel, he with a bowling ball under his shirt. I bowled terribly, blaming the offset in my balance. Overall, I had fun.

This year that same friend’s birth rolled around and we found ourselves at the same bowling alley, reliving the same birthday celebration. With the holidays often interrupting many of our social schedules, it was nice to be among the larger group of friends again. As I sat down and put on my bowling shoes, with plates of every kind of fried food sitting before me, I decided I was going to have fun. Being in celebratory situations have often been difficult after my child died. Can I have fun? Will people think I am over Mabel? If I have fun, will I be forsaking her? As I pledged on one of babylossmamma’s posts, I am trying to let myself have fun, without too much guilt. It is a fine balance because I still worry that people will think I’m fine, I’m “healed” (I have another whole post in the making about what I think of that word), that I’ve moved on. My therapist asks me, what am I afraid will happen? The best answer I can come up with is that my support will go away. I still need lots of it. I struggle with anger, sadness, jealousy, hurt on a daily basis and need people to recognize that and cut me some slack sometimes. For the most part they have. I hope that can continue.

And of course, Mabel still came up that night amidst all the fun. A friend brought his girlfriend- someone I’ve simply met before but didn’t get to know. She was simply a ball full of pleasantness. Sweet and interested. We made lots of small talk. Since I was bowling remarkably well, I felt the need for her to understand it was a fluke- that last year, I was terrible. I blamed it on being big and pregnant, but secretly I’m usually not very good. We talked about where we were from, went to school, etc. And then she asked innocently, “so how many kids do you have?” My stomach dropped- but for such a different reason than it used to when asked this question. My baby died and I can say that now. I just felt so bad for her that I was about to drop this bomb on her, turning this lighthearted conversation into something inevitably sad.

“I had a baby last year and she died after birth. So none living at the moment.” I smile din the best way that I could- trying to show that yes, I’m sad, but I’m not going to go to pieces right at this moment.

She did all the right things, reaching out, touching my arm, saying, “Oh, I’m so sorry.”

She was then at a loss for words and so as I often do, I tried to fill the space.

“It’s ok…. Wait, no, it’s not ok that she died, but it’s ok that you asked. Thank you.”

And then it was my turn to bowl. So despite all my fun, Mabel was still there, present and with me.

Do you let yourself have fun? Without guilt? How does it turn out?

Sunday Synopsis

20 things that babyloss moms do that feel crazy–  do you do some of these things?  anything you’d add to the list?

Not everyone gets a rainbow– I’ve read this article before and I recently came back to it.  I think this is so so important.  We fight against the platitudes of “you can always have another” but yet we recognize that grief does seem to get a bit easier if we have a rainbow.  BUT what if we can’t have a rainbow? What if we are struggling to have a rainbow?  I stiffen at any story that includes a rainbow as part of “healing” because it immediately alienates anyone who doesn’t have a rainbow.  We all (rainbow or not) need to know how survive life.

Getting grief right– This article came across my fb feed at just the right time.  I’m clearly struggling with grieving “right.”  Unlike the woman in the article I didn’t feel like I was succeeding at grief in the beginning- I took a lot of time off.  But here’s the thing, I felt like I was succeeding- I had (have?) this vision of the kind of bereaved mother I want to/should be.

and then from some of my followers/blogs I follow, these recent posts really hit home:

On prayer and the randomness of the world– Whoa.  When people survive a tragedy, saying they were watched over by angels, what does it mean for us who didn’t survive (ie our babies died)?  Are we not watched over? Are we being punished?

Being reproductively challenged today– talk about gratitude.  She’s struggling with infertility and yet can find something to be grateful for about her situation.  At least (and I hate that phrase) she’s struggling in this day and age and not hundreds of years ago.

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On an unrelated note, today is a special day.  I met Thomas’s mom at my perinatal loss support group- she was the first in-person person I met who had neonatal loss and was on the same grief timeline as me.  Today I am paying special remembrance to Thomas and his mom and dad as they honor him on his first birthday.  Happy Birthday, Thomas.

The anger-sadness balance

On New Year’s day I sat on my couch, scrolling through my old facebook posts. I was looking for my New Years post from the previous year as a comparison to how I felt this year. A year ago I thought I had been through the biggest rollercoaster of my life- finding out I was pregnant, learning about Mabel’s Down Syndrome, embracing and preparing to raise a child with special needs and then learning my baby’s birth defects might not be compatible with life. It was, at the time, the worst year of my life. I was unsure how 2014 would turn out and low and behold it turned out to be worse. Some beautiful moments- the birth of my daughter followed by the darkest, her death and the grieving that came with.

In my scrolling, I came up across the posting about her birth and death. In reading the words I had written and gazing at the photos above them, I was struck by sadness. I couldn’t believe that it all had actually happened. That I actually had a baby. That she actually lived. That there was a moment when she had been placed, warm and goopy on my belly just seconds after birth. That she lay quite still on a warmer, struggling to breathe despite numerous tubes and interventions. That we actually had to tell the doctors that we were ready- ready to let her die. That she actually died. That we actually buried her.

Tears ran down my cheeks. Wanting to really let myself really feel the sadness, I then pulled up the video I had made:

I cried and I cried. I also cried because I realized how long it had been since I cried like that. I have just been so angry, there hasn’t been any room in me for sad. I know more sad is needed, but I can’t seem to force it. So how do I do it? How do I balance anger and sadness? How do you?

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?

New Year, New Necklace

 

My cousin asked me “Do you have any New Years Resolutions?”

I quickly answered, “No.”

But I’ve been thinking about this more as the days pass. I was never much one for resolutions. I do remember making some in college- one of which was to be nicer, which several of my friends are adopting this year (though I find it a little humorous, because they are my friends. I think they are nice anyways). A lot of people put exercise on their resolution list, and as much as I support good exercise, I sometimes get a little annoyed because, as a regular gym goer regardless of the season, my familiar territory becomes super crowded. As this article suggests, priorities change after trauma and loss and they can be reflected in our resolutions. Yes, I may vow to eat more vegetables, but I’ve been doing that everyday- New Year’s doesn’t change that for me. Instead, despite my quick response to my cousin, I might have a few resolutions.

 

When I first lost Mabel I was so hungry for support, especially from people who had been through something similar. I joined lots of facebook groups-Down Syndrome Bereavement Group, Grieve Beautifully, Loss Parents Walking Alternative Paths, All That Love Can Do <3, Remembering Our Babies After Stillbirth/Neonatal Loss and Life After Loss of your Baby/ Surviving Stillbirth/Neonatal Loss. These groups helped me immensely in the beginning, but I’ve found they bring me down lately- a lot of people in stages of grief that are painful for me to observe. So I’ve stopped following them.

 

I’m taking down Mabel’s sign at work. I originally put it up to help ease the burden of people asking about the baby and saying painful platitudes in response to the answer. Plus, I’m not sure people are reading it anymore. I still get an occasional “How’s the baby?” and I can now easily say, “I have sad news…” I can do it without being tearful and can redirect the conversation back to the patient. Oddly, I don’t always want to talk about her in the exam room anymore. I still have one month of overlap- last January I was heavily pregnant and so I may still see some patients who saw me last with child and they may ask, but now I’m readier.

 

I’m going to work on my anger. I find it’s turned me into a bitter, jealous person. Recently at my December babyloss support group, my anger was evident and there were new people at the group. Though it’s a safe space to be able to express our feelings, I fear that my anger scared some of the new people who are far earlier in their grief. I also heard of someone I know who not long ago had a miscarriage- and my thoughts about it were horrific. I, who supports loss is loss, had trouble finding sympathy because this person had a living child. I was angry that she had even tried for two children when I’m still waiting for one living one. What kind of mean, bitterness is that? It’s not who I want to be.

 

I’m going find some peace at work. I constant fear, especially as the one year anniversary approaches, that my job will pressure me to go back to doing call. All I can say is I’m not ready right now (will I ever be?). I need to address this fear so I can continue my job peacefully.

 

I’m wearing a new necklace. I have been so kindly gifted many necklaces for Mabel. The first one I received I immediately put on and wore every day since, despite the little carrot charm falling off every now and then.

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So I received a new one- very similar with the carrot, but this one with color.

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I think it reflects how I want to feel this year- adding a little more color into my life. Embracing gratitude, be less angry, finding some peace.

 

So my resolutions? New year, new necklace.

Do you have any resolutions?

The changing of the years

Last year my New Years facebook post was

“2013, you were rough. 2014, who knows what you will bring,”

and I linked my blog publically for the first time. Now that a full year has passed, I keep thinking how I want to reflect on the past year and approach this new year. 2014 brought me Mabel, which of course was wonderous. But save for a few moments when I thought she might actually live it was so very painful. It was a dark dark year for me, despite the outpouring of love and support I received in the wake of my daughter’s death. I still have thoughts that I’m ashamed of. I still have trouble letting myself be happy. I could go on enumerating all the wonderful things people have done in memory of Mabel and in support of Chris and I. I could further go on listing all the struggles I have had. But right now, after a multi day GI virus and the fatigue of the first holidays without my girl (hence the blogging absence), I am tired. So today I simply sum up my thoughts on the changing of the years.

 

2014, you were rough. 2015 please be kind.

The hospital

The hospital. Saying the words, envisioning the building puts my stomach in knots.

 

My practice has a Monday morning meeting at the hospital. It used to be every week, but in the past few months it’s morphed into a once a month affair. We gather as a group of docs and midwives and talk about protocols and patients, ensuring we are all on the same page. Aside from the 7am start time, I have traditionally enjoyed the meetings. I like having clinical conversations with my colleagues- we sometimes debate and I almost always learn something. I also think it’s good care for our patients- getting fresh eyes on complicated cases, allows everyone to give suggestions on how best to care for our patients. And on top of it all, I enjoy the company. My practice has four offices in different towns and the hospital on top of them, and we are spread among each location- so I am lucky if I interact with one of my colleagues on a daily basis. Even when we are in the same office, our schedules are quite crammed so there is not much time for catch up or small talk. So Monday morning meeting is a chance for us to see each other and catch up for a minute.

The meeting takes place on one of the maternity floors in the hospital, in a spare conference room. It’s the floor on which I spent two weeks while pregnant with Mabel. During my hospitalization I was allowed about an hour off the monitor a day and one Monday I decided to use that hour to go to Monday morning meeting. I popped in wearing my “nicer” hospital clothes (yoga pants instead of pjs) and sat as my colleagues discussed work. It was good to see them- I had seen many of them while I was there- if they were working they would often stop by my room for a quick snack and a chat, but it was comforting to see them altogether.

The meeting holds new meaning for me. It takes place in the building where my daughter died. It’s on the floor where I spent the last good moments of pregnancy and where I returned to my room empty handed. After Mabel died.

We had a Monday morning meeting this week. I went once before- in September. I felt I needed to, as we had just hired a new doc and midwife. But I skipped October- I didn’t want to go. The thought of the place causes a painful physical response and frankly, I was not up to the task. But this week, I needed to go- there was a clinical issue I needed to discuss (how to care for pregnant patients on methadone). So I skipped my usual Monday morning exercise class and headed in. I parked on the street because my usual hospital parking is in accessible- my ID doesn’t work for the parking garage and I haven’t gotten around to fixing it. As I walked closer to the door, my heartrate sped up and I felt that familiar pain in my chest and stomach. I regulated my breathing and made sure to look at the funny rabbit and carrot decoration that sits in the revolving door to the children’s hospital. The carrot gave me some comfort. But when I hit the doors to the maternity floor, I could feel the tears coming. Before heading into the conference room for the meeting, I had to hide in the bathroom for a few minutes to have a good cry.

I wouldn’t call it a panic attack- I know enough about them to know that’s not it. I simply identified my response as grief, simple grief. This place is so sad for me now. It also represents mountain I need to climb. The hospital represents birth- normal birth for most people, a usual happy occasion, and if I ever want to be a full scope midwife I will eventually nee to climb that mountain and welcome normal birth again. I am far far from that place.

My doctor called my response- a reaction to trauma. The term didn’t quite sit well with me at first. People have trauma when they go through sudden, unexpected events- emergency c-sections, stillbirth, prematurity. My daughter’s death was in some way expected. I should have been prepared. I often feel I don’t have the same right to claim trauma like those who were totally caught off guard do. My doctor encouraged me to accept her definition of trauma- that it doesn’t have to be sudden; it can be long and drawn out. Death, a life-changing event, whether expected or not can be traumatic. So I’m working on accepting that- apparently it’s necessary to do in order to move forward in my grief.

 

How do you view the hospital/doctor’s office? Are they traumatic for you at all?

Future midwives

I’m sure I received some training on loss when I was in midwifery school. I don’t remember the specific lecture or chapter in the books, but there had to be some educational experience I received. I remember more the on the job learning. I worked as a Labor and Birth nurse while I was in midwifery school. I helped woman as they worked hard laboring for a baby that was extremely premature, that was unlikely to live, that had already died. I was scared at first- I think scared of saying the wrong thing, of not knowing what to say, of doing something that would make the situation worse.

During school, while I was working as a nurse, I remember caring for one woman who was being induced around 24 weeks, the cusp of viability. Her uterus and amniotic fluid were infected, meaning the baby who already faced significant life threatening struggles that came with extreme prematurity, also faced life threatening infection. Truth was, this baby had very poor chances of survival. The neonatologists knew this and gave her the option of resuscitation or comfort care. As her labor was induced she talked and cried with her family, with her healthcare providers about what was best for her baby. She had a family member who had extremely preterm twins who suffered many long term effects from being born so early. She was unsure if she wanted that outcome for her baby, but also could not imagine not doing something for her child. When my shift was done, she was just getting into active labor and had not decided what to do. I found out later from the nurse who relieved me, that her baby came suddenly, without the doctor even in the room, and she still had not decided. Her baby did not survive. The worst part of being part of her story, was not knowing how to help her. I know, even with all the training and experience in the world, I still might not have been able to help her decide, but maybe I could have. I’ll never know.

I have since been with mothers as the doctor couldn’t find a heartbeat on the ultrasound. I’ve had mothers whose babies come prematurely and die sometime after birth. I’ve had mothers who choose to terminate for a fatal diagnosis and a mother who has carried to term despite one. I helped mothers through subsequent pregnancies and subsequent miscarriages. Each woman I have cared for, I have learned from- more so than in any class in school. Ultimately I have learned most from my own experience.

This week I’ll be joining the program director of my local pregnancy and infant loss non profit in a guest lecture about loss to the local midwifery students. It is at the school I went to, I worked at and I still (though rarely these days) precept at. I sort of invited myself when the program director mentioned it to me- how could I not? This is what I do- I’m a midwife and I’m a babyloss mom.

As we talk to the students, I want to give them all I can. I want them to remember the talk and I hope, being given by someone who knows both sides will help. But I need your help too- I only have my own experience. I’ve come up with some points I wish to make- I know it’s not a perfect list, and so I encourage you to give me your suggestions to. I also know that these do not apply to everyone’s situation and it’s not a comprehensive list encompassing nearly everything- I am trying to look at it from both perspectives- a provider and a patient.

Tell me: What did you want your midwife or doctor to do? What did they do that was great? What did they do that you wish they didn’t?

 

Stillbirth

  • Be honest. There is no good way to say your baby is dead. Don’t sugar coat; just be clear.
    • I was with a mom with a stillbirth at term. She had been sent from the office to OB triage when the midwife couldn’t find a heartbeat on the Doppler. I sat by this woman as the APRN did a scan looking for a heartbeat. We were waiting for the Maternal Fetal Medicine doctor to come and make it official. Since he was tied up, the APRN started scanning, all of us hopeful she’d find something with the ultrasound that the Doppler could not. The room was silent as she scanned, the parents on edge, the nurses and I staring at the screen. It felt tortuous for me- I can only imagine what it felt like for the parents. Finally, because no one was saying anything, I said simply, “they don’t see a heartbeat. I’m so sorry.” I explained how we had to wait officially for MFM doc and I stayed by her side until he came. There were a lot of “whys?” and I was honest there too “We don’t know. We may never know. But here’s what we can do to try to find out…”  
  • Describe the process- let the patient know what happens next (do they want to go home, gather things, wait at all? Induce right now?) Discuss induction and pain management. Discuss the baby coming out- mention about skin color changes and bruising that might be apparent. Offer to call NILMDTS

 

General Loss Guidelines

  • Say “I’m sorry”
  • Use the baby’s name…. over and over.
  • It’s ok to cry- in front of the patient too.
  • Get familiar with the process- offer autopsy, karyotyping, TORCH titers, thrombophilia workup. Talk to the hospital social worker to learn what happens to the baby, how parents arrange services (cremation, burial?)
  • Sit. Be with patient.
  • Coo at the baby- talk about all the aspects of a baby you would otherwise- the hair, whose nose she has. Encourage parents to explore- undress baby, open eyelids. I never opened Mabel’s eyes- I wish I did, just to see the color (likely dark gray as most newborns are, but now I’ll never know)
  • Be a photographer- take photos, encourage parents to take photos. Call professional photographer. Since no one from NILMDTS was available for me, my nurse and midwife took photos- so many photos and I am so grateful they did.
  • Let parents stay with baby as long as needed. Encourage patient to call and invite any support they choose.
  • Send patient to a floor without babies for PP recovery
  • Early discharge
  • Prevention of lactation (also milk donation)
  • Offer sleep aids
  • Referral to resources- counseling, local bereavement groups, books, websites.  Go through your hospitals bereavement box, so you know what’s in it.

 

Follow up

  • Call patient- some potential questions beyond “how are you doing?”
    • How are you sleeping?
    • Who is around to help you?
    • Are you eating?
    • How are you spending your days?
    • Services?
    • Have you looked through bereavement box yet?
  • Postpartum visit
    • Plan first morning appt- so pt does have to wait in waiting room with other pregnant patients
    • Plan extra time for appt
    • Be prepared to go over autopsy
    • Discuss birth control or preconception- no judgement on whether it is “too soon”
    • Ask about photos- ask to see if she has some and wants to show
  • Remember due dates- good time to call or send a card
  • Anytime you are reminded of that patient, tell her-call or text her- she would love to know she is not forgotten
  • Attend services if you are invited and can go

 

Fatal diagnosis (if carrying to term)

  • Frequent appointments if pt desires
  • Listen to FHR first thing
  • Plan for longer appointments
  • Consider frequent ultrasound if pt desires
  • Help patient with birth plan
  • Coordinate care with specialists- NICU, pediatric specialists to discuss immediate care of baby
  • Encourage special plans- blanket, outfit, photographer for baby
  • Discuss logistics- funeral home, cremation, burial
  • Connect- give resources
  • Help patient celebrate pregnancy

 

Subsequent Pregnancy

  • may need more frequent appointments, reassurance of FHR
  • If previous stillbirth- testing (level II, NSTs, early delivery)

 

Miscarriage (also applicable with fatal diagnosis choosing to terminate)

  • Say “I’m sorry”
  • It’s ok to cry
  • Discuss logistics- expectant management, miso, D&C, D&E
  • Discuss “why” (most common known cause- chromosomal, but often we have no idea why…)
  • Listen
  • Discuss future fertility if patient desires
  • Call patient for emotional follow up (“just wanted you to know I’ve been thinking about you)
  • Referral if indicated (recurrent pregnancy loss, genetics)

What am I missing?

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?

 

Sometimes knowledge is power and sometimes knowledge is pain

I have a friend who is a doctor and she shares snippets of her daily life- the trials and tribulations of a resident physician, her patients and the lessons about life she learns. Some stories are beautiful and uplifting. Some make me cry. Some make me cringe. All are insightful.

Recently she wrote of a meeting of providers- discussing their patients’ cases and one of them, an oncologist was distracted because he had recently learned of his mother’s breast cancer. He had trouble focusing on the meeting because he knew better than anyone what the diagnosis meant for his mother and his family.

“Because sometimes knowledge is power and sometimes knowledge is pain.”

This was me, my entire pregnancy with Mabel. I had a week before my first ultrasound where I assumed everything would be okay. Until there was no heartbeat and we thought I had a blighted ovum. Seeing a heartbeat a week later, confirmed a viable pregnancy but I spent the rest of the first trimester knowing what it felt like to miscarry and worried I’d be feeling that way again. Though I told my family I was pregnant before my genetic testing, I asked them not to share the news until we got the results, because even though I had no risk factors, I knew it could still happen to me. When I learned Mabel had Down Syndrome, I decided to accept the diagnosis, but it wasn’t simply recognizing I’d be raising a child with special needs. It was also recognizing that I might not be- I was all too familiar with the risk of miscarriage and stillbirth with the diagnosis (ironically, I wasn’t thinking about neonatal loss). When we were told her kidneys weren’t working, she had no fluid and if she were even to be born alive, her lungs would likely be too small to sustain her life, I had some hope, because what mother doesn’t? But I also knew. I’ve told people myself when there is no fluid at early gestation that their baby will die. I knew.

Yes, sometimes knowledge is power. I was able to research and make my own educated and informed decisions about my body and my baby. But knowledge was also pain for me. I never enjoyed my pregnancy like I should have, like I wished I did; it was too tainted with worry.

I’m sure those of you out there who have had a pregnancy after loss also know that knowledge is pain. There are some of you who may have learned that lesson with your first pregnancy, like me.

Is knowledge power? Is knowledge pain? What is your experience?