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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The Rollercoaster

I have spent the last two weeks preparing for my baby to die.  It was the most concrete thing I could hold onto.  I knew the facts.  Baby’s kidneys are damaged, leading to low fluid which will cause either stillbirth or the lungs inability to work after birth.  I know what stillbirth is; I see how people cope.  All my research showed such a poor prognosis, that I couldn’t imagine another outcome.

Today we had an ultrasound by one of the more experienced Maternal Fetal Medicine doctors- he had also done our CVS and fetal echo.  I respect him and value his opinion.  He gave us a glimmer of hope.  The baby’s growth was good- 54% (2lbs 15oz).  There was a tiny pocket of fluid- 2cm.  It’s not a lot.  It’s about what it was the two weeks ago- it had dropped to 0 last week, so its feels like a little improvement.  But most importantly, he said the chest looked essentially normal. He has seen ultrasounds of babies with hypoplastic lungs (small, non-functioning) and their chests look like just ribs and heart- not really much for lungs.  Our baby’s chest looked essentially normal. There is still no way to tell lung function, but it was a positive sign.

He encouraged us to meet with a neonatologist again to discuss prognosis.  He used an online program that could calculate survival based on gestational age- the closest figure he could give was at 25 weeks/1000gm, the survival rate was in the 90% and survival without severe/moderate neurological impairment was in the 70%.  These are rough figures and our baby is bigger (1320gm) and further along (29 weeks), which means the numbers would be better.  But this is from MFM and based on gestational age.  It doesn’t take into account our baby’s poor kidney function, possible poor lung function and other potential complications that come with Down Syndrome.  A neonatologist will likely be able to paint a more realistic picture.

It’s tempting to think that this means this baby is going to be ok- but I’m not sure that’s totally realistic either.  This baby will have kidney problems, will have breathing problems, will have neurological problems (from Down Syndrome and/or prematurity).  This baby still might die.  But there’s a chance?  I had given up hope, but now I feel like there might be some.  It feels scary and dangerous.

For now I just wait til the meeting with the neonatologist- I can’t commit to hope nor despair.  I’m in limbo.

Finding peace with a heavy heart

I knew better than to go to an ultrasound alone.  Chris had a meeting that came up, but luckily my cousin works a few minutes away and so she joined me for my scan last week.  In my last post, I had said I was worried about growth and bowel.  Good news is growth and bowel are fine.  Baby is in the 57%, which is about 2lbs 4oz.  No issues with the bowel.

But we have a new set of issues.  As the sonographer was scanning, she got to a point where she was taking a measurement- I thought for some reason she was looking at the ureters (which had been dilated in the past)- so I asked her what she saw.  She told me she was measuring fluid. “Oh, I forgot about fluid! How is it?”  I asked.  Fluid wasn’t even on my radar as a potential problem.  It was low. 1.3cm total. I started crying.

I’m familiar with what fluid should be- I know at term it should be above 5cm and if its below, then we induce.  I had no idea what it would mean at 27 weeks.  We waited for the doctor who at least alleviated my first fear- I was worried we’d have to deliver.  I wasn’t ready!  First we had to figure out the cause.  Our best guess was that maybe I had been leaking fluid.  I didn’t think I had been- but who knows, maybe I was that midwife who didn’t even realize her water was broken.  So off to the hospital we went.

Once in triage we determined my water had not been broken.  My  midwife and the MFM (Maternal Fetal Medicine) doctor there went through other scenarios.  It could be uteroplacental insufficiency- they placenta is not working well, not feeding the baby.  But the baby was a normal size and they checked the blood flow from the placenta to the  baby, which was also normal.  It could be the kidneys.  Maybe I was dehydrated.  So the plan was to admit me, aggressively hydrate (IV, lots of water to drink), bedrest and re-examine in the morning.  Baby was looking fine on the monitor, so there was no immediate concern.  I got steriods to help with lung development in the event I had to deliver early.  The MFM doc talked to me about some potentially scary stuff- but I was convinced I could hydrate and things would be better. So far we had passed all the big landmarks- normal level II, normal fetal echo.  I was optimistic.

After 24 hours, and I think 7 liters of fluid later, my ultrasound showed essentially no change in fluid.  They took a closer look at the kidneys and they looked small- one was echogenic (sign of damage).  There was no urine in the bladder or the ureters.  The MFM doc confirmed my worst fears- the prognosis is poor.  We went on to meet with a neonatologist, a pediatric urologist and a pediatric nephrologist. After meeting with everyone, this is what we know now:

Kidneys

In utero, the baby’s kidneys aren’t working and they are atrophic (small).  The placenta is taking care of the kidneys’ usual function, so baby doesn’t need them now.  But s/he does after birth.  There might be some function- its just unknown until baby comes out and has to do it on his/her own.  This is an unusual presentation of kidney problems in a baby with Down Syndrome, but there is no other explanation, so they think the heart of the problem is chromosomal.

Lungs

A baby’s lungs need fluid to grow and expand.  Because there is such low fluid, the baby’s lungs will be small and may or may not function on their own.  We don’t know how long the fluid has been low- it happened sometime between 22 weeks and 27 weeks.  The earlier the low fluid, the poorer prognosis.   Low fluid at 27 weeks does not bode well, but it may have been low even earlier.

Fluid

Low fluid means baby has no cushion- s/he could very easily have a cord accident (push on the umbilical cord and cause stillbirth.  So the risk of losing this baby on the inside is high.  Also the fluid doesn’t allow the baby to move and stretch in the same way, which causes Potter’s Syndrome- some unusual features- limbs can be contracted (we already know there is clubbed feet), and there can be distinct facial features (low set ears, flattened nose, epicanthal folds around the eye).  Many of the features are also features of Down Syndrome, so I am unsure how that will play out.

Outcome

We’ve had some mixed messages through all this.  Every time I meet with someone in Obstetrics, we are given the worst possible prognosis.  Their impression is that this baby will not make it.  As someone in OB, I totally understand this perspective and I am devastated.  Every time we meet with someone in the pediatric field, they say there is no way to tell until the baby comes out.  I understand this perspective as well and I am the tiniest bit hopeful- but also scared of what further disabilities my bay could have.  My baby *might* live!  But will s/he need a vent for the rest of his/her life?  Dialysis? Kidney transplant? Seizures from low oxygen? What kind of life will my poor baby have? It’s so very very overwhelming.

Everyone agrees that the longer I stay pregnant, the better chance for lung and kidney growth.  Since there is nothing to do to improve this but wait, I don’t need to be in the hospital and I don’t need to be on bedrest.  For now we will do weekly testing- a heart rate check and a fluid check.  We will monitor the baby’s growth and look at the kidneys every few weeks. But the reality is, we might lose this baby.  If the baby can survive the pregnancy, we may lose him/her shortly after birth.  If the baby can survive that, s/he will be a very sick little baby.

I have taken a couple weeks off work to adjust to this diagnosis.  I feel like I’m living my worst nightmare for this pregnancy.  I opted for genetic testing early on so that I would know my risk of stillbirth. I thought of my patient who had a baby with known trisomy 18 (risk of stillbirth or death in the first week of life is somewhere around 99%).  I couldn’t imagine having to grow a baby that would likely die.  And that’s what I’m doing.  I feel like I could adjust more easily if I wasn’t faced with dealing with pregnant women everyday, harboring a secret about my poor sick baby, pretending to be joyful.  Its hard enough being visibly pregnant in the world in general under these circumstances, but to interact with 20-30 people everyday, who will likely comment on it and want to talk about it, just feels like torture.  People tell me not to worry about work, but I have to figure out a way to come to terms with it, because if I can’t work, I feel like I have no future.  This weighs on me too. That and the guilt I feel abandoning my colleagues at a very very busy time of year.

I am hopeful the new year will bring new perspective, new hope, new peace.  I will return to work in some fashion.  We will monitor this baby.  I will grow him/her as best I can.  For now, I am just working on finding some peace with such a heavy heart.