Bravery

Sometimes I need to be reminded that I’ve done some hard things. I have survived. I am brave. I am brave because….

I hung up the phone, the news of a Down Syndrome diagnosis for my baby still ringing fresh in my ears. I took a deep breath, basked in a moment of acceptance and relief, and then continued on my day, keeping my personal life and professional life separate. I continued seeing my patients that day, all pregnant with healthy babies, all while holding my news secret.

I said yes.  Yes to a baby with special needs.

I walked into the CT Down Syndrome Congress annual conference, scared but trying to keep an open mind to learn all I could about what life is like parenting a child with Down Syndrome.

I left the hospital with a likely life limiting diagnosis for my baby, choosing minimal fetal monitoring until the baby had any hope of survival, knowing that I was choosing to preserve my fertility over heroic measures for a baby that would likely die, knowing that I might forever struggle with guilt if she was stillborn before the set date we were willing to intervene.

I told the doctors to take out the vent and held my baby as she died.

I held my lifeless baby.

I handed my baby to the nurse, never to hold her again.

I left the hospital empty handed.

I continued to live life.

I went to my first support group, though I cried tears of fear in the hallway before going in.

I went back to work and told hundreds of people, “my baby died,” and continued to care for them with a smile.

I chose a new career path.

I talk about my baby to strangers, to try to break the silence.

I try to ask for what I need.

I had had another baby despite crippling anxiety that I might lose him too.

I’ve been to baby showers.

I’ve held babies.

I write about my feelings here, for all to see.

Why are you brave?

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Ikea, revisited

Remember that time I was in line at Ikea? I saw someone I knew with her two young kids and I couldn’t bring myself to say hello- her with her two living, breathing children; me with only the memory of my dead one.

I saw her again.  At our local walk to remember.  I was there to remember my Mabel.  She was there to remember her first child, born still.

Oh, the stories untold.

Sunday Synopsis

Listening to the screams of a bereaved mother–  We are not always easy to be with in our grief.  Our sorrow is uncomfortable.  Our moans of sadness are hard to hear.  But it is our right.

My right to be a mother- an honest mom speaks out.   Postpartum depression after miscarriage is real.

Annie Lennox: Son’s death Changed my Life.  We don’t often hear of celebrities who have experienced babyloss, so I am struck when I hear of one.  As sad as I am to hear there are more of us in the club, I am thankful that those with star power can speak out and bring more of a face, more attention to babyloss.

TTC After Loss: The Negatives: Whew! this one is right on if you’ve ever tried to conceive after loss.  The hope that comes with the idea of another baby (not a replacement one, as we all know) can seem so uplifting.  But we have to remember that with trying to conceive comes disappointment for some or many.  Trying to conceive after babyloss can be miserable.  miserable.

The unique grief of mothers without living children.  I found this article so accurate.  I especially appreciate the part about a rainbow not making it better- that not everyone gets a rainbow.  We need more help and support learning how to cope without or despite a rainbow.

What it means to hold space-Who holds space for you?

A grieving mom’s request A Short, concise, well written article, which sums up some of my requests.  How about you? (thanks to LosingBennyBear for sharing!)

Words of Advice from Baby Loss Moms

At the end of my talk to my local midwifery students, I gave them a handout, that speaks volumes.  You may recognizes some words, because they were simply taken from the comments section in response to my question of what would you like midwifery students to know about baby loss.   Feel free to comment if you have more advice to give! Here is the handout:

Words of Advice from Baby Loss Moms

 

“Video clips of ultrasounds meant so much to me and I would have like a recording of my daughter’s heartbeat if they could have given me one. At the time I didn’t know it those would be my only memories of her. I appreciated when my doctors were honest but sensitive.” -mother of Caroline, carried to term after a Trisomy 13diagnosis, who lived for 58 days.

 

“I think they didn’t tell me anything because they had no clue what was going on themselves and wanted to wait until they had more info- but, that choice made things much worse!!!! Talk to the patient, you have to talk them through what’s going on, you have to tell them. Also: if there’s a chance a baby might not make it, you have to prioritize letting the parents see the baby while working out the logistics. I didn’t get to see my kid until after he was gone. I even asked but was told it was too complicated. That’s still absolutely devastating to me, and probably always will be….One other thing: I was given the choice to go to private room on postpartum, or to a different floor. I really appreciated having a choice.” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Perinatal loss can be such an “ambiguous loss”. It was so validating to see everyone reinforce that he really was a real baby (a concept that almost all brand-new mothers struggle to comprehend at the moment of birth).” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Even if the death occurs later, call or write or visit the parents. We so appreciated that one of our midwives and her intern were able to make it to the ceremony we held for Paul. But a call would have been just as meaningful…. If applicable, invite the parents to share a photo of their baby for the baby photo board or book.”mother of Paul who died unexpectedly a few weeks after birth

 

“And for subsequent pregnancy: if you need to discuss the death of the previous baby, give notice in advance so the parents can prepare (especially if you need them to tell their story, or to dig into traumatic events). Also I was offered a viability scan I didn’t “need” but that was really reassuring.” mother of Paul who died unexpectedly a few weeks after birth

 

“With miscarriage (or infant death in general I suppose), even if there is ‘something wrong’ with the baby that you can prove with genetic testing, no one should ever say ‘It’s OK- the baby had a problem anyway.’ I’ve noticed a lot of pregnancy books use this kind of logic, and it’s bad. We don’t throw out people or stop caring about them because they’re sick, so what are we supposed to feel better that our baby that died wasn’t perfect, and that caused his death?” –mother of Serphim, who died of Potter’s Syndrome five hours after birth

 

“Encourage parents to hold, kiss, love, bathe their baby… If you’re uncomfortable handling a dead baby, please ask one of your colleagues to take over. This was our only negative experience with the staff- and it felt awful to have someone reject our precious babies. Remember that these parents need your care, support, love perhaps more than anyone else on the floor.” –mother of A&C, twins who died after PPROM at 20 weeks.

 

I was that woman, sitting in the OB office following my 19 week anatomy scan when the midwife came in with a student and very coldly and matter-of-factly started to explain the slight anomaly found on ultrasound. When I started to cry the midwife offered little support and I could tell she was busy and I think she really believed the finding was nothing major and that I was over-reacting. It was the student who came back into the room alone and sat with me, let me cry, and explained what was going on as best as she could.   So my advice to your students is that there will be days in clinic when you are busy and running behind and stressed, and these are the days when you might have to break bad news to a patient (or several patients), and your pager might be going off, and your receptionist might be reminding you that you have 3 patients in the waiting room, and you will probably have a huge stack of papers on your desk that need to be reviewed… but in that moment, for that patient- your time and presence is what she needs most.” –mother of Clara, carried to term after a Trisomy 18 diagnosis and born still at 36 weeks

 

“It might be tempting to let the parents know that their loss isn’t a big deal compared to what other people go through, but that can be very disturbing to the grieving parents. Don’t tell them it was nature’s way of getting rid of damaged goods. It was their baby. They loved that baby and would have done anything to save it. To you, it was a blighted ovum, or a common Trisomy problem, or ‘barely even a positive’ – but to that family it was precious and beloved. The loss is still very real no matter how unformed the physical person may have been.” –mother to baby lost to miscarriage

 

“Our nurse hung a doorsign of a baby in an incubator on our door so that those entering my postpartum room would know that we had a NICU baby. That was great as it eliminated any too-cheerful questions. However at my six week postpartum checkup, the doctor didn’t know my baby had died.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“Cyr, take photographs- YES. And remember, you can never tell a loss mom that her baby is too beautifulm too perfect, too special and too unique. She will never hear this as her child grows. Give her a lifetime of school picture Oohing and Aahing in the short time you have with her. Use the baby’s name.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“I was pregnant with our 2nd baby and had our first u/s at 9 weeks. They couldn’t find a heartbeat. I t was hard and still is. I recall the u/s tech saying ‘oh I just know you’ll be back in 3 months pregnant again!!!” She was just so hopeful. But that’s not what I wanted to hear. I needed to honor THIS baby and THIS loss. So overall, I just wanted the midwife team to honor the present and respect what we are going through at the moment.” –mother of baby lost through miscarriage

 

“To make sure parents have all mementoes of their baby that they would like; to make sure parents know they have no been ‘cast adrift’ from the unit- you become so close to staff whil your baby is being cared for going home is like an estra wrench on tope of the loss of your baby; to make sure parents know how to access counseling. I would also add a couple points about traumatic birth- whether it’s something like PPH or an illness such as preeclampsia and HELLP syndrome- that mums know where to get information about what happened to them and why, and how to access support/forums/debrief about the birth.” –mother of Hugo, born at 24 weeks and lived for 35 days

What more do you have to add?

Just think of the midwifery care you can provide to patients…

This post that popped up in my email reminded me very much of the conversation started on one of my Sunday Synopsis’s in the comments. I’ll be honest: I haven’t read the whole thing- and I’m not sure everything resonates with me, because of of the religious aspect.  But it falls under the “things not to say to the babylost” category. I don’t bring it up to start more conversation on the topic, but instead I wanted to share one point that hit me-

3. “Just think of the ministry you can have someday to parents who have lost children.” No. At least not the ministry you’re thinking. That would require me to say that God is somehow in this for them and I happen to know that’s not helpful. Plus, I don’t want that ministry. I’ve spent twenty years of my life trying to serve God full time.  I’ve put every major decision of my life through “God’s will” as a filter, including setting aside life dreams for myself.  All of the big things I’ve tried to do for him have been heartbreak for me.  I think I’m done with ministry at this point. – See more at: http://www.calebwilde.com/2015/01/23-spiritualized-comfort-cliches-to-avoid-when-a-child-dies-3/#sthash.q30SIzFp.dpuf

I have received similar comments that irk me just a bit. I am not religious and therefor not providing ministry, but I am a midwife and provide care. It could have easily read “Just think of the good midwifery care you can provide to patients going through loss.

Yes. Now that I’ve experienced loss myself, I do think I provide even better care to women as they experience their own- from infertility to miscarriage to stillbirth and neonatal loss. I have learned so much and become a resource for others in my medical community. I am unafraid (less afraid?) to help support my patients through their grief.

BUT, it does not make me feel better about my own baby dying. I like to think I gave decent care before- I might even have a few patients who could vouch for me on that. And even if I didn’t, frankly, I’d rather be a crappy midwife with a living child that a super compassionate midwife with a dead one.   The comment implies that I needed my daughter to die so I could grow personally and professionally. I know plenty of other care providers who could use similar growth, but I don’t wish a dead child on them.

I can see how Mabel’s death has made me a better midwife in some ways, but I don’t really need anyone to point it out or use that to make me feel better. It invalidates some of my grief. Yes, I think I show much more compassion to my babyloss patients, but it was a crummy journey to get there. I would have preferred to avoid it, thank 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?

Would you rather know?

The thought came up in my bereavement group. Someone said they just wished they were told that babies died- that these awful things can happen- hearts stop beating in utero, water breaks too early, placentas abrupt, birth defects are incompatible with life, babies are deprived of oxygen in labor. Being someone who knew that babies die for all sorts of terrible, but not common reasons, I can’t identify with that wish. In some ways I wish I didn’t know. Of course, I sought information and am thankful I knew what I knew so I could prepare. But in general, I’m not sure all pregnant women want to know. And as a provider I’m not sure I want them to know. There are some things, yes, I think it’s important they know- ones that they have control over or can test for, but the unpredictable? I don’t think I want all my patients living in unnecessary fear. I’m sad I missed out on the blissful ignorance of a first (or second, or third…) pregnancy. I thought it was bad enough having extra information as a midwife, but then being given the actual knowledge that my baby might die, I never really enjoyed being pregnant in the way I wish I could. I’m not sure I ever will.

I had a patient- an educated one, a nurse in fact, in front of me for her first OB appointment. I was doing my usual spiel when we got to genetic testing. I don’t have endless time, so I try to summarize and simplify the issues as best I can. She had no risk factors, so I talked of a test that can detect the risk of having a baby with Down Syndrome and trisomy 18 and 13. I usually qualify the statement, explaining most people are familiar with DS, but the other trisomies can be more severe and those babies don’t often survive the pregnancy and rarely live into childhood. I talk much more in detail about them if people ask (surprisingly few do), but it is important for me to let people know what they have the chance to test for. If a woman declines testing, I have to ask “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?” I am pro-choice (pro-information!) and just need people to be comfortable with their choices. And sadly, medically legally, this question is important. There have been wrongful life cases in Connecticut (talk about sad, people suing their providers because they wish their living child had been terminated). I need to document their wishes. I don’t even cringe when people say yes, they would terminate a baby with DS. But I have a problem when people declines testing because they think it won’t happen to them.

The patient sitting in front of me said she didn’t want testing and when I asked my standard question, “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?”

She responded, confident that her age of 33 put her at no risk, “Well, that’s really only a concern when you’re 35, right? And I have no family history.”

After a few more failed attempts of trying to get her to understand that it can still happen despite no risk factors I finally said, “Well, I had no risk factors- I was 33 and had no family history and I still had a baby with a trisomy. So it can happen to anyone. What I need to know is would a trisomy diagnosis change your management?”

I hated bringing Mabel into the conversation, but she just wasn’t getting it. I felt she needed to know.

I had another patient with a subchorionic hemorrhage that kept getting bigger and bigger each week in early pregnancy. She had two late first trimester miscarriages and had been about to pursue IVF when she found herself spontaneously pregnant. As the hemorrhage grew, we providers all held our breath, thinking this pregnancy might go the way of the others. If she remained pregnant, it was so big she was at risk for placenta abruption in the second and third trimester. She was educated too- another health care professional and said to me as I expressed some of my concerns “We are just taking it day by day.” She is still pregnant, in the second trimester. I have mentioned placental abruption, so she knows. But I haven’t gone into detail, saying I’ve known people who had such a case and preterm babies who died. She didn’t need to know. Or perhaps she did know, she just didn’t need to hear it harped upon by me.

So how much do we tell pregnant women? We can’t induce everyone at 39 weeks because some babies’ hearts stop at 40 weeks. We can’t do c-sections on everyone because babies’ hearts can stop in labor. There are risks to those as well. I don’t even tell women to do kick counts daily- it only increases worry. Do kick counts when they are worried, I tell them. Women know their babies best- if baby isn’t moving like normal, then take the time. This is the struggle I have as a midwife- I know the bad that can happen. But I also know most of it is unpredictable. So I take this burden on myself; I worry for my patients, so they can have the blissfully ignorant joyful pregnancy that they deserve. Worrying about unpredictable things can only increase stress and cortisol levels, which isn’t good for moms or babies either.

(disclaimer: I don’t mean to minimize anyone’s anxieties around loss, especially once you’ve experienced it. once you’ve known loss, worry away! You’ve earned the right to worry, even if it’s about unpredictable things. Your innocence was lost like mine.)

What do you think? Do you wish you knew babies died? How would it have changed things? Do you feel the need to lecture pregnant women on the awful that can happen?