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?

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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?

 

Fur Babies

I always said I wasn’t responsible enough for a dog until I proved myself with a baby- coming straight home everyday after work, arranging daycare, having a small creature totally reliant on me. When Mabel died and I made connections in the babyloss world, especially with those who had no living children, I learned many of them had “fur babies.” They poured their built up love and caring into an animal that they had or brought home after they lost their babies. At first I didn’t want one- my baby died and replacing her with an animal was not going to make it any better.  In fact, getting a dog would make her death more real. I wouldn’t have minded it as a temporary thing- caring for a snuggly puppy in the first months of my grief, while home alone, but I would want to give it up when I returned to work.  The idea of doing all I should have been doing (rushing home from work, middle of the night awakenings) for a dog instead of a baby seemed too painful.  But as the months rolled by and the house remained empty and quiet, I started to have second thoughts.

Chris has always been a dog lover. He’ll the get on the floor and wrestle with your dog. He knows how to talk to them and make them stay or sit. It’s almost as fun watching him play with dogs as it is watching him play with kids (he’s a natural there too). He would have been happy getting a dog a long time ago- I was the hold up. So he was thrilled when I suggested we start looking.

I was picky. The biggest requirement was that we get a dog that didn’t shed. I shed plenty of hair and have trouble keeping the house clean with just me- I didn’t want to have to be vacuuming every day or find stray dog hair in my food. I also was partial to smaller dogs, but Chris preferred bigger dogs, so we agreed on medium sized. Plus we want one that’s friendly, active and good with kids (I do hope to have more in the future). I loved the idea of a rescue dog (I feel almost morally dictated to get one) but with all my pickiness, a rescue was seeming less likely. Chris researched and found a local breeder of Golden Doodles and I was completely won over by their teddy bear appearance (if you want to be distracted by cuteness, look up golden doodles on pinterest). We began the process.

The breeder had a litter of medium sized dogs due in the end of July and so we signed ourselves up. A month of waiting for the pups to be born, then another month of waiting to meet and pick out our pup and a last month of waiting to take her home. Our Muppet has been three months in the making. In the last few weeks I would often comment “this must be what it’s like to be excitedly waiting for a baby to be born,” rather than wanting to stay pregnant and avoid the inevitable day, learning whether your baby would live or die.

Now we have a newborn pup at home and are living the lifestyle of newborn pup parents- frequent potty trips, sleeping poorly at night awoken by the cries of a pup in the crate next to our bed and showing her off proudly to anyone who will look.

Do you have a fur baby? Where have you put all your pent up love after your loss?

I’m so sorry, babyloss moms

I look back at some of the people I’ve cared for who have had losses and I feel terrible.  How could I have cared for them better?  Some of these women I was barely acquainted with and some I knew quite well.  I know no one can really imagine what it’s like or what someone needs unless they’ve been there themselves.  But now that I know what I’ve needed, I feel like I’ve failed these other women. Could I have called them more?  Did I remember their due dates?  Did I make sure someone (if not me) was following up with them?  As if it weren’t awful enough to lose your baby- to not have enough follow-up?  These poor women must have felt so alone in their grief.   And I, as a midwife, should understand the significance of having a baby and the significance of losing a baby.  Perhaps it’s because I hadn’t even had a baby before.  Maybe our practice is too big and some people don’t get anchored to one of us.  Maybe I felt too awkward or didn’t know what to say.  Maybe I thought I would be a reminder of something sad.  Maybe I didn’t want to be reminded of something so sad.  Maybe I felt ill-equipped to deal with grief.  All these things have some truth but are also bogus.  If I could rewind and change how I was, I would.  I would call them every week on the weekly anniversary of their baby’s death.  I would call on their due date.  I would ask, “tell me about your day” instead of “how are you?”  I would say their baby’s name, have them to tell me their birth story in their own words and ask them to show me pictures.  I would ask how they chose their baby’s name, what they remember about their baby’s body and how they plan to memorialize their child.  I would go to their babies’ wakes.  I would send a card.  I would hug them sincerely and cry with them.  I would tell them that their engorgement could last a week and to start icing and binding as soon as possible.  I would make a plan with them for how to survive the days.  I did some of these things with some people.  But the experience of going through this has shown me just how inadequate I was.  I am so sorry.  I will be different, I know that.  I will be better.

I think as I go back to work in the hospital, normal birth will be hard.  I will be reminded of all the things I did not have.  Because we are human, we midwives can not help bringing a little of our own experience into the delivery room.  Before Mabel I had never birthed, so I was a blank slate- no prejudices or experiences to color my care.  But now all my care will be colored.  I know I will help woman through fear of childbirth, but think what do they fear? I will comfort women in their pain, but think what pain do they really know?  These are not fair questions.  Sometimes I fantasize about having a specialty practice- where I just help people through losses.  I feel like I might be inadequate at helping women through joyful births.- it might be too painful for me.  How can I give good care when I’m hurting so much?  But someone facing a loss- that I know.  It’s a familiar pain.  I can empathize.  When I was pregnant and then later grieving my loss, I was desperate to know someone who has done it.  Not necessarily to see how they survived, but to have the sympathy of someone who knows the depth of this hurting.

Send me the babyloss moms.  Send me the poor fetal prognosis moms.  Send me the moms of babies born still.  Send me the moms pregnant with babies with Down Syndrome.  Send me the moms with infertility.  I have not been all these people but they all experience a pain I am too familiar with.

I truly do not know how I will be as a midwife again.  My instinct is to gravitate towards what I now know- loss.  But it might be too sad, to live loss over and over again with people.

I have heard of some programs at other hospitals.  Perinatal hospice and difficult diagnosis teams.  Mulitdisciplinary teams that help people like me navigate the system. Social workers, nurses, neonatologists, pediatric surgeons, bereavement specialists, OB providers all working together to help a couple with difficult decisions when handed a possibly fatal diagnosis for their baby.  I had excellent care, yet there were many times where I felt a little lost.  What specialists should we be seeing?  What information do I need to make decisions?  I don’t think I really understood that Mabel was likely going to die until we met with the neonatologist.  We had to decide on monitoring, when we would intervene to save our baby, how aggressive to be with treatment.  There were almost impossible decisions to make. If I, with all my knowledge of what these things mean, had trouble, how would someone not in my field manage?  My hospital is a well known one, perhaps the best in my state, but no such program exists.  Wouldn’t that be a wonderful thing to bring to my hospital?  Then I could truly say, send me sad and worried mothers to be and I can help.